A to Z or incurable chronic illness

First A to Z of chronic illness.

I was diagnosed start of 2018, but I believe I had had it for much longer. I had last seen a gynae doctor in 2010. I had a bad experience and didn't want to go back again.

My diagnosis was hard I had been admitted to hospital for a burst cyst and they did an MRI. Doctors told me they just found endometriosis, but my discharge papers said they had found adenomyosis. This was a hard way to get this news there was no compassion or support. 

Adenomyosis is a presence of endometrial cells within the muscle of the uterus. During a period tissue and blood can't be released, and flow out of the body, and so causes swelling and intense pain. It can often be misdiagnosed as fibroids

More info go to www.adenomyosisadviceassociation.org

I have tried lots of types of birth control. I have tried pills and had lots of side effects from these, and tried the Mirena coil twice. The first time I fell pregnant and miscarried. The second time I bleed heavily for 3 and half months losing 80-100ml a day.

The consultants wanted to give me the menopause injection but it's too dangerous for me because I suffer from chronic spontaneous urticaria were I have allergic reactions whenever my body is understated. The worry was if I react to the injection they can't take it away and this could make me very ill.
So I'm currently coping with no birth control at all right now. So my endo is out of control.

But it seems more and more doctors want to treat endometriosis and adenomyosis with birth control. This is just plaster on the problem.

Birth control types
Progestin only pill
Estrogen-only pill
Combination pill(both hormones)
Implant (plastic stick under skin that releases hormones)
IUD (Mirena hormone pill, copper coil)
Zoladex (menopause injection)

From my first period, I always had bad cramps. I dismissed it as my GP told me it was normal and just get used to it. It wasn't until I was diagnosed in 2007, having suffered for 7 years that it all made sense. However the older I have got and the worse my endo/adeno got the worse the cramps have got.

During my period they can be so bad that I can barely speak or move until the pain subsides. It feels like someone is ripping my insides apart from the inside. Every part of me feels like it's being shredded. I also get cramps when I ovulate, this can be from a few days before until a few days after. Then there are the days and times when I have been very active and I will get cramps then too. One of the hardest to deal with is the painful cramps after sex. These can sometimes last into the next day. 

Menstrual cramps are caused by the uterus contracting to help expel the lining of the womb.
It's the hormone prostaglandin that creates this and high levels of this hormone can cause severe menstrual cramps.

Women with Endometriosis and Adenomyosis get cramps that can cripple and effect everyday life this is due to adhesions that pull on other organs when uterus contracts (endometriosis) and the cells in the muscle wall being pulled and pushed (adenomyosis)

I have struggled with depression for most of my adult life. My health has been one of the largest contributors for this. I have suffered from multiple illnesses and had 11 surgeries only 2 for endo.
Being made to feel that my illnesses are in my head. My GP told me what I was experiencing was "normal and get used to it". I have had multiple consultants after diagnosis say "you don't have endo you're wasting our time" I damaged my wrist in 2009 and after 2 ops and pain being worse I was told it was "all in my head" after the second opinion it was not in head but needed more 2 more ops and I'm left with permanent damage. .
Being in pain every day is emotionally exhausting. Some days I feel like I'm doing less of a job as a mum because I am not as physically able to take the kids out and be a fun mum.

Depression is very common in people who suffer from chronic illness. It can feel very lonely when you're in pain and unwell, especially when many people have either never heard of your illness or don't understand it.

Endometriosis/adenomyosis are much more than just a period they affect a woman every day. With multiple different symptoms. Dealing with these on a day to day basis is hard and takes its toll on your emotions.

Urticaria is more than just a rash it can be a life-threatening condition.

If you're in the UK and really struggling please contact www.mind.org.uk
Don't suffer alone.

I was diagnosed when I had my appendix removed by quite simply luck. 7 years after first of many visits to go about painful heavy periods that they dismissed as "normal"

2 years later I had the second op but it came back a year later worse than ever. I knew I wanted a family and my consultant told me that any more surgery could cause me to not conceive.

I have been very blessed to have 2 healthy children, but sadly also had 3 miscarriages. Pregnancy was hard I had a lot of pain the whole time and my labours complicated.

I am now currently waiting for a diagnostic lap to see how bad endo has affected my bowels and where else it is effected before I have a hysterectomy for adenomyosis and removal of as much endo as possible.

I am in pain every day, it's just the amount that changes. I get bloated when busy or at the end of the day. And I get pain if I walk for more than 10 minutes.

Endometriosis is where the lining of the womb (endometrium) grows outside of the womb onto other organs and causes adhesions between organs too.

This condition can cause high levels of pain, nausea, vomiting, headaches, bowel and bladder issues, bloating, fertility issues and many more symptoms.

There are many theories for what causes it but no one really knows. Treatment can range from pain relief, hormones to surgery, but it's incurable.

For more information and support go to www.endometriosis-uk.org

F is for Fertility.

At 22 I was told the only cure is a pregnancy in 2007. THIS IS NOT TRUE.

My 1st pregnancy was in 2011. I had a Mirena fitted but sadly ended in miscarriage. In Aug 2013 I got those 2 lines we all want. But while my family wanted to celebrate I couldn't, not until my baby was in my arms. He arrived Apr 2014.

Nov 2014 I took a test a very 2 faint lines, I booked to see GP, but I started to bleed. Just like in 2011, GP said it was most likely a miscarriage.

Then start of 2015 we decided to stop my pill. In Jan of 2016 2 faint lines, but again I started bleeding again. My 3rd miscarriage I was heartbroken. but I was blessed in Feb with another pregnancy. I was nervous but I had an early scan and there was our peanut. 2 weeks later another scan and heartbeat. In October 2016 our little girl arrived safely.
I feel blessed every day to have my babies. I had lots of issues in pregnancy but I'm proof that DREAMS DO COME TRUE.

There is an association with women with Endometriosis having fertility issues they don't know why, and there is no link between the stage of endometriosis and ability to conceive.
It's known a large group of women who had been struggling to conceive then have surgery to remove endo, scar tissue adhesions and cyst find it easier to conceive in a short time afterwards. But they don't know why this happens. Once pregnant most women report some pain for short time in early pregnancy but things settle and pregnancy runs as normal after this.

Adenomyosis also causes fertility issues and can have a complication during pregnancy such as miscarriages, smaller babies and pre-term babies.

If you're struggling to conceive or worried about this then please talk to your doctor.

If you're trying to conceive I wish you all best 

I have seen a lot of gynaecology consultants that either think they know my body better than I do or tell me I don't have endometriosis. I even had a gynae doctor say I was making his job harder. (Because I can't have most treatments due to the other conditions I have).
This has happened too often and from 2010 till 2016 I avoided gynae because I have a big lack of trust.

Gynae wards can be hard, my most recent visit, for a burst cyst, was tough. The ward has every woman with any things gynae related, all ages and stages of life. They try to separate but not always possible. The older ladies tend to be at one end and the early pregnancy at the other. When I was there for my burst cyst I was bloated and got asked how far along I was. I just about held it together and explained why I was in. But inside I wanted to cry.

I feel that although primarily endometriosis is a gynaecological condition. It's also a multi-system whole body condition. It can grow anywhere in the whole body. The symptoms can affect the whole body. Headaches, tired, aches in joints, swollen abdomen (endobelly), nausea, vomiting, painful bowel movements, pain urinating, pain before during and after sex. And many many more symptoms.

Heat is our biggest friend and support wether it's hot water bottles, electric heat pads, or wheat bag.
sometimes a hot bath or shower can help too. Although I prefer heat pads as I curl up when in lots of pain and cramps.

You must be careful not to burn yourself with heat pads

Sometimes I like to heat my bed before I get in it too as if I get cold I definitely feel worse.

I suffer with insomnia due to pain, stress, anxiety and depression.

It takes me ages to fall asleep and when I do fall asleep I often wake in the night. When I wake in the morning I feel like I haven't slept at all. I feel like I could nap but I don't have the time. Some days or times are harder than others.

I often find that my biggest issue that causes insomnia is my mind. My mind seems to think bedtime is thinking must worry about everything time. My brain goes WHAT IF?
I have tried aromatherapy, massage and relaxation and none of it was helping. I made myself a weighted blanket this did help a bit I still wake as often as before. But fall asleep when I wait quicker.

I also find doing something creative helps quiet my mind sometimes I write poems draw pictures or paint.

Insomnia is a sleep disorder that is where people find it difficult to fall asleep and/or stay asleep.
The average adult needs between 7 to 9 hours sleep a night.

Some tips the NHS give are *Go to sleep and wake at the same time every day.
*Relax at least 1 hour before bed.
*Make sure your bedroom is dark and quiet. *Don't use digital devices or TV just before bed the light wave in these devices wake you up more. 

Most people who have a chronic illness have experienced judgement. It's the judgement If we need meds, surgery, or even have an illness. Not all illnesses can be seen. I wish I could teach the world not judge others.
I wish people would ask questions about my illnesses rather than make judgements that are not true.

I have had lots of comments about my chronic illnesses.
*It's just a bad period
*I get cramps too it's not that bad
*You get bowel issues because of your diet change your diet.
*Why do you need those meds it's just a rash
*You don't look ill
*It can't be that bad you alway seem fine
*You just need to think positive and you will get better
These are just a few of the things I have been told by people. I think if people experienced what we do for even one day then they might be less inclined to judge so quickly.

Then there is the judgement we get from the doctor's
Dr - have you taken the meds
Me - yes they didn't help
Dr - but you took all the dose correctly
Me - yes they didn't help
Dr - you must not have taken them for long enough. Try them again I will see you again in 6 months
Why do doctors assume we have either not taken meds correctly rather than that the meds don't work.

Me - my endo is back
Dr - you don't have endo
Me - I have had it removed twice
Dr - you don't have endo you just have heavy periods
Me - it's in my notes please I need help the pain is worse
Dr - (reads notes) yes you did but there is nothing I can do you just need to take painkillers regularly
Me - I can't take most pain meds I need help (start crying)
Dr - have you seen a councillor to help with your emotions.
Why they think our symptoms are because our mind has created them or can mind has created them or can be fixed with counselling.
It's NOT IN MY HEAD

I think one of the most important tools we can arm our selves with is knowledge.

Knowledge of our illnesses what it is, and how it can affect us, what treatments are available.

I have found this is so important as my urticaria means I can't have some treatments that the doctors want to give me for my endometriosis. If I didn't know about both illnesses and impacts on each other I could have ended up very sick.

'any fool can know. The point is to understand' Albert Einstein

I have had moments when seeing my GP and they have either known very little or nothing about my illnesses and I have had to educate about these conditions.

'the greatest enemy of knowledge is not ignorance, it's the illusion of knowledge' David J Boorstin 

The biggest problem is a doctor who has little knowledge of illness but because they are a doctor they believe they know the condition better than the person who experiences it.

If we are powered with knowledge as best we can we can better fight for the best treatment for ourselves

For information about endometriosis I recommend Endometriosis - the experts guide to treat, manage and live well with your symptoms by www.endometriosis-uk.org

I often feel lonely but for many reasons.

I feel lonely because sometimes people don't understand quite what it's like living with chronic illnesses.

It can feel lonely when you don't leave your house for days because your unwell. Especially when people say "oh your unwell again!"

Sometimes even though others in the world are going through what you are it can still feel really lonely. Like your the only one.
Especially when people treat your illness as a taboo and try not to talk about it like it's dirty.

Because of this, u spent the first 10years after diagnosis on my own. I didn't know anyone with endometriosis and had never heard of it. When I tried to talk about it people got uncomfortable and would change the subject. So I kept it to myself and felt really lonely. I have now found my voice and I don't want anyone to ever feel lonely. 

I have had 3 miscarriages each one was emotional and each took a part of my heart with them.
Miscarriage much like talking about periods is still considered a taboo. People don't know. What to say or say the wrong thing. Comments like "it wasn't meant to be" "you will fall pregnant again" miscarriage are not just a part of trying for a baby it shouldn't happen but for some women it does. Doesn't make it easier though.

These are not easy things to hear when what your going through is a loss. The first one I ever had I didn't tell anyone but my husband for years I kept it a secret. This made it harder to deal with no one knew to understand why I was sad and distant.

Even though I had 3 miscarriages I have been really blessed with two beautiful miracle rainbow babies, but I will never forget.

There are no real words that can make you feel better when this happens but a friend to listen too you can help.
.
Research in Scotland of 15,000 women found endometriosis increased risk of Miscarriage by 76%. Women also have a higher risk of ectopic pregnancy. Also, have a higher risk of premature babies and the need for C-section a
.
If you have any concerns about miscarriage, falling pregnant, then please talk to your doctor.

Nausea seems to be a symptom I am dealing with more and more.

It used to be that I got nausea when my pain was really bad, some days the nausea is so bad u can't eat and just want to be sick, sometimes it's so bad it does make me sick.

But now I get it if my pain level is high but also whenever I eat. It's not a large meal that causes it but any meal bigger than a snack.
Nausea happens any time of day or night. Nothing seems to help this feeling I have to just wait for it to pass.

I have had 11 surgeries. For tonsillectomy, appendectomy, hernia repair, foot surgeries (they now think linked to possible CMT,) wrist surgeries and Endometriosis.

Surgery is hard and takes longer to heal on the inside than it does on the outside. 
Each time I have had endometriosis surgery it was ablation, not excision. after the healing time, I did feel a bit better, but each time after a year my pain came back and worse than before.
I am currently awaiting a diagnostic lap to find out how bad my endo. My consultant needs to know if I need bowel or urology consultants present when I have my hysterectomy. So know that is a second surgery awaiting me in the future.
Endometriosis is often diagnosed after a laparoscopy surgery. (Though sometimes can be diagnosed through scans.) .
The condition is also managed through surgery too. There are two main types of surgery for Endometriosis Ablation and excision.
The simplest way I can think to explain the difference is to image endo is a weed.

Ablation burns the top of the weed, leaving the root to regrow (does not mean it will always grow back) this technique is quicker to heal from and leaves less scar tissue.

Excision digs out the whole weed (does not mean it won't grow back) this technique takes longer to heal from and can leave more scar tissue.

There are pros and cons to both and chose between which is best for a patient. Has a lot to do with their age, do they want children and what organs is the endo on.

This is not a medical opinion please consult your doctor and talk to them about your options.

I have pain in my feet when I walk too much, due to surgery on both of them. I have pain in my wrist every day to different amounts depending on how much I use it, due to 4 surgeries one has gone very wrong and did more damage. Then there is the daily pain from endometriosis.

On a good day I have a constant dull ache, and constant pulling whenever I move. This pain gets worse as the day goes on.

My bad days are almost unbearable, feeling like someone is pulling all my organs apart while crushing them too. Pain that travels all over my whole body and makes movement difficult. My brain does not function well at all.

I can't take ibuprofen due to urticaria, cosine makes me throw up constantly. And stronger meds while they take only the edge of the pain. They leave me unable to do day to day activities due to side effects (this means I can't take them while looking after my kids).

Pain changes who you are and how you live your life. Of all the symptoms of my illnesses, pain is the biggest and one of the hardest to manage.
I have seen pain specialists and none have been able to find something that helps me, but I know my urticaria makes it harder. People who have found CBD oil often suggest this to me. But I can't take it as it has known interactions with the meds I'm on for my urticaria. 

I have found whenever I have an appointment with a doctor I go in with a list of questions. What they plan to do? How will this affect me? What does the future hold? What side effects will this med give me? I make notes during the appointment too.
I do this as I often forget what I wanted to ask when I enter the room. Because I get so nervous. Then if I don't write what they say to me I often forget what they said because I can get emotional.

Being prepared means I get all the knowledge I need to make a decision about my treatment. I don't forget anything and feel ready to get ready for future appointments. 

I think this is one of the most important tools for anyone with a chronic illness. Don't be afraid to rest, because our bodies are going through so much we have to know when to take it easy and let our bodies rest.

I know that when I have had a busy day, especially a very active one. I need to rest the next day. It's important to listen to your body and rest when it tells you too.

But I know sometimes I'm my own worst enemy and don't always rest then get worse because I didn't take it easy. Often causing worse endo flares and urticaria attacks.

After the surgery is an important time to rest. You must remember that the inside of your body takes longer to heal from that on the outside. Just because wounds are healed does not mean insides are. Rest!

If you suffer from a chronic illness then you need support. People who understand and care for those who are ill.
I have my husband who looks after me when I have a bad day, and family. But I don't like to ask for help. I try to cope on my own as best I can.

Then there is the support of those I find on here. People who are going through a similar journey and understand what I'm going through and how I feel.

Without this support, I used to feel very lonely and I'm so glad I have support and can support others too.

If you ever feel lost or lonely please go to www.endometriosis-uk.org for support groups and online support.

Treating endometriosis is hard as every woman reacts to and needs different treatments.

I have tried so many different pills and Mirena coil twice none have helped. Surgery has helped but long term it grows back again. 
I was told having a baby was the only cure I have had two now and definitely not a cure and is worse than before.

Recently they had a set plan that they said all women with endo had to have before surgery. First was pills, the Mirena coil then menopause before surgery. I said pills don't work coil hasn't worked in past. They then said I had to try the coil then menopause or no surgery. I explained I couldn't have menopause because of dangerous of setting off urticaria. He just said again you must try it or you can't have surgery. This is wrong no one should have to follow a set treatment plan we are all individuals.

My urticaria has been hard. The first specialist put me on steroids whenever I had a reaction. When they didn't get better and I saw a second specialist who said this was a really bad long term. And I needed lots of very strong antihistamines and more than one type too. I was to only use steroids when reactions get worse.
I wish that doctors treated patients as individuals. the best thing you can do is be as knowledgeable about your conditions and treatments available and the pros and cons of these. If you really don't want a treatment you don't have to have one.

I have suffered on and off for years but I was only diagnosed at the start of the year when I started getting reactions every other week, some so bad that I ended up in resus.
Through tests, they decided I had chronic spontaneous urticaria. My reactions are due to my body producing too much histemine when under physical or emotional stress. (Endometriosis and adenomyosis definitely make my reactions worse.)

I am now on a few meds to stop my body overproducing histamines, but the downside to this is they seem to have weakened my immune system so now get more colds and bugs than I usually do.

My urticaria makes treating my other conditions. The doctor's worry that giving me an injection of the hormone could set off a bad urticaria reaction. Problem is the injections can't be taken away and mean it could be difficult to stop a reaction. It means some non-medical treatments are also unavailable. CBD oil which helps so many women can have interactions with the drugs I'm on for urticaria, so I can't even try it.

If you have any allergic reaction keep a diary of what you eat, do, as well as the level of reaction. And go to a specialist for further testing.

A part of my body I have got to know well especially during my period when I sometimes feel like I'm spending most of my time in the bathroom.

My vagina is unhappy though, I get pain from my endometriosis most days it's like a dull ache most days, but goes up to a stabbing pain the more I do. I am in pain every day.

I have pain from the scars of giving birth to my kids. Mainly from my son, I knew it was bad when the midwife said "I need to get a surgeon" took an hour and a half to stitch me back together. My scars hurt and I feel that my vagina now looks strange as both labias are third torn off.

Because of both of these sex is painful and I don't enjoy it like I used to. I found this post hard as I don't often talk about this part of my life. Too much of a taboo for most people, so I feel shut down by others, so keep it to myself. 

I have always been on the curvier side since I started my periods. but after kids my endo got worse, out of control and so did my weight I got to UK size 18.

I had for a long time tried to lose weight, But struggled for ages. In 2017 I joined slimming world lost 4.5st and got down to a size 10. Then my urticaria got worse. Taking lost of different meds meant I gained 2 stone in the last year. I have been trying to lose for the last 9 weeks and have lost 16.5lb. only 9.5lb to get back to target.

I feel like weight and hormone issues run side by side. Irregular Hormones cause weight issues and weight issues add to hormone issues.
The other issue with trying to maintain weight with endo/adeno. Is bloating I found some weeks if I was having a flare up it looked like I had gained weight when I hadn't. This can leave you feeling disheartened and I found more likely to end up binge eating.

Well x-ray, ultrasound, MRI and any other scan picture type test.

Sometimes we go through all of these and still don't get the full picture of what's going on in our bodies.
For me, it took having my appendix out to get diagnosed with endometriosis. But since my endo has got worse I have had a scan and none have shown the full picture. Each just gives a bit more of the picture.

The ultrasound showed my ovary was attached to womb but no other endo.

Then I had MRI which showed cysts on ovaries womb attached to multiple organs and places.

But the consultant thinks it's worse than even the MRI shows due to my symptoms.

Recently had ultrasounds to check liver gallbladder and stomach as I have been getting so much pain they were worried I had a different issue. Alongside blood tests, they have said there are no issues with these organs so most likely endometriosis in these areas. So will have to wait till next lap to get it confirmed completely.

While I get frustrated that scans don't show the full picture I'm glad they check to make sure they are not saying something is endo when it could be something else. I often worry I put everything down to endo and dismiss and don't go to the doctor and could miss something.

If you have a chronic illness and have a new pain don't assume it's your chronic illness get it checked.

I wish I had known about Endometriosis when I was younger. If it was taught like you learn about bones and digestive systems, how nerves work, and some other illnesses.

If I had heard of endometriosis I would have known that my periods were not normal. I would have pushed my doctor to send me to a consultant to get help. So many times my doctor said, "this is normal you just need to get used to it."

I wouldn't have waited 7 years and only got diagnosed by chance, all because I got appendicitis.
I might have understood all my options for treatment and could have better advocated for my own treatment.

I hope in time that young girls learn about endometriosis and other illnesses so they know when something is wrong with their bodies. Periods. Should not be a dirty subject.

For more information on this subject go to www.endometriosis-uk.org and check out the #whatiwishilearned

No journey is a straight line, we all have different paths to take and no two are the same. Different bumps highs and lows.

We can't compare our journeys, and shouldn't compare yourself to others. What your going through is bad for you. Someone else's experience does not make yours less valid.

Share your experiences and what works for you and what doesn't. But don't expect others to follow your route. What works for you if it is surgery, medication, natural remedies.
I really hope that you have enjoyed my a to z of chronic illness and it helps you as much as it's helped me making them.

Allergic reactions

After I gave birth to my daughter, my endometriosis was getting worse and worse so decided to try the Mirena coil again.
As soon November 2017 it was fitted I was in worse pain, by 8 weeks in I was bleeding so heavily that I felt weak. I was also having allergic reactions every 2 weeks and had to go on steroids to keep it at bay. By 3 and half months in I was bleeding still as heavy as when it was put in. enough I had it removed by GP thought that maybe my reactions were to progesterone. The reactions kept happening after I had coil removed. I ended up being referred to an Allergy specialist for testing. while waiting to see a specialist I had a reaction so bad that I ended up in resus as I could breathe.

When I got to the allergy specialist and I went with photos of my reactions and a diary or when they happen they said they thought I wasn't allergic to progesterone. I asked about the allergies to medications. she thought it was likely I wasn't allergic to them either but instead suffer from a form of urticaria.

They did skin prick and then injection tests of progesterone, all the antibiotics I have had in the past and all of them were negative.

A few months later I went back for further testing of progesterone I was giving 100mg and had to be monitored during my time there. Again no reaction. They said I have Chronic Spontaneous Urticaria. this means whenever my body is under physical or emotional stress my body produces too much Histermine and causes an allergic reaction response. 

I got put on a high dose of a mix of antihistamines and other drugs to stop my reactions. while I still have the reactions they are not as bad as some have been in the past. But these drugs also mean my immune is weakened and so when I catch a cold its worse than I used to be. My most recent cold went on for over 2 weeks and ended up turning into a sinus infection. I feel like life is a bit of a balance of all my conditions. Due to the urticaria my endo doctor doesn't want to give me treatments for my endo (menopause injections) as they could set off the urticaria and if that happens then they cant stop the reactions as they can't take the injections away.

Sex and pain

Sex not an easy subject especially when you are not talking in a positive way. The only time people want to talk about sex is to boast about how great it is. No one talks about when its bad for fear they will get judged for not being any good in bed. However, sometimes it's not that sex is bad but painful due to something medical.

In these situations, it's not due to lack of ability on either side, but to do with a medical issue neither side can help. This is what I am currently going through. My husband and I have always had a good sex life and enjoyed sex. But for me, as my endometriosis and childbirth injuries got worse so has my sex life.

I get pain every time, doesnt matter if its oral, hand stuff or full sex it always hurts. I have two issues the first being giving birth to both my babies caused a lot of damage, both labias have been torn off leaving scars either side of the clitoris, I have lots of scars inside too.

• This causes issues that sometimes my labias get caught up during sex and this pulls them. 
• pain during intercourse when scars are rubbed against too much.
• pain from the clitoris as the blood flows in the area arousal turns to pain.

Then there is the pain the endometriosis causes. due to my womb being attached to many places at once. When I have penetrative sex it hurts. I find if I have control of positions and how we do it I can reduce the pain but I always have pain. We have tried different positions and nothing really helps. 

I feel like someone is trying to rip my organs apart.

The pain can be so bad I just want to cry, and the pain from sex can last up to 24 to 36 hours afterwards. I really struggle because I want sex, I have a sex drive, I want to have that intimate time with my husband, but it's difficult when I know it's going to cause me lots of pain. 

I have tried trying to enjoy sexual experiences on my own but have the same issue, my clitoris just sends pain rather than pleasure and using toys causes the same issues as with my husband.

I find this emotionally difficult having gone from a very good sex life where I could have multiple orgasms and now I can't even get close to one and haven't had one for over 2 years. As soon as anything feels nice the pain kicks in, I had a doctor suggest its in my head and gave me a set of dilators to help. (dilators are like dildos but come in sizes from a small finger up to an average penis) I have tried hypnotherapy and relaxation but nothing helps. 

I feel like this effects both me and my husband but for now, while I wait for surgery I don't think this issue will get better only worse as my condition worsens. I'm not writing this for sympathy but awareness, not every couple is having a great sex life, they want one but its just not happening.

Depression and Anxiety

As I sit here writing this today has been an emotional rollercoaster of ups and downs. one minute smiling and happy, the next being on the edge of tears feeling not good enough. Then there is when I feeling calm and collected like I'm doing well, next thing I know I have to deal with the doctors and almost on the edge of a panic attack. This is what life with depression and anxiety is like, some days feel like I'm stuck in a wood, I can't see past the trees and don't know the way out.

I have suffered from depression for a long time but diagnosed since I injured my wrist in 2009 and then had to leave my career as a teacher in 2012. From there my health has got worse and worse. I Now suffer from Endometriosis, Adenomyosis, Chronic spontaneous Urticaria. But it's not just physical health that effects me, I don't feel feminine or attractive this is partially due to my weight going up and down with my health (both physically and mentally) But also because when I was in secondary school I was called a Man every day from 1997 till 2004.

I have had councilling and medication to help with my depression and anxiety. I now know that my anxiety is linked to when I have to deal with my health or healthcare professionals. If I'm seeing a doctor I know and trust my anxiety is better. However, if I have to see a doctor I don't know or something chances with my treatment plans with no notice can set off an Anxiety attack. This is due to lots of negative experiences with hospitals and doctors in my life. My depression is all over the place. I don't really know what causes it but know it gets worse when my health is bad. Some days I feel so low like I'm failing at life completely, and that I'm making everyone else's life harder. I find I go out less but also feel that I get invited out less too.

I often find being a parent adds to this too. With mums sharing only the best that they do, you feel your own parenting is not as good. then there is the judgement of other parents, you gave your kids a bag of crisps to stop a tantrum, you let your kid have a tantrum because you are not giving in to their demands. No matter what you do someone on social media thinks your doing it wrong. Then there is the loss of identity as a stay at home mum my world is all about the children, I don't have a job to go to where I can be me and have my own identity. Rather than asking how someone's children are ask them how they are doing.

I find it hard to open up to people and be honest about my feelings and when I do occasionally people either change the subject or don't seem like they understand. So I tend to bottle it up and keep it to myself. I know that this is not always the best thing I can do. But opening up makes me feel so vulnerable and then to be shut down just damages me more.

If you have a friend who opens up about struggles support them, listen and be compassionate. don't dismiss or trivialise what they are saying just because it might not seem big to you doesn't mean it isn't to them. If you have a friend that hasn't been out as much or contacted you lately, please talk to them, invite them out. If they do not talk or come out right now don't forget about them try again, they might just be having a really bad day and can't see through the trees in their wood.

Mental health is important and we need to build up rather than knocking down.

poetry

I find art very therapeutic but recently I have been trying my hand at poetry and have written two poems about living with a chronic illness. I have written them openly so they can be about any chronic illness.

Just because
Just because you can't see it, doesn't mean it's not there.
Just because I'm smiling, doesn't mean I'm ok.
Just because I'm calm, doesn't mean I'm not fighting.
Just because you can't see my symptoms, doesn't mean I'm well.
Just because I'm ok today, doesn't mean I will be fine tomorrow.

Just because I'm standing, doesn't mean I can't fall.
Just because I struggle, doesn't mean I'm not strong.
Just because I live with this daily, doesn't mean it's my life.
Just because you don't know its name, doesn't mean it doesn't exist.
Just because it's not talked about, doesn't mean I suffer alone.

My pain is real.
My illness persists.
My struggle is daily.
But my life is more than this.
We are not alone!

The second poem is inspired by the poem pretty ugly by Abdullah Shoaib its a poem that when you read down you get one meaning, then when you read from the bottom up you get another. so read each line from top to bottom and then bottom to top.

Invisible Illness
Am I a warrior?
I am weak.
My struggle is daily, so I don't think,
I am a strong person.
By the end of a long day,
I don't think I can cope.
I won't tell myself,
there is strength inside me.
I keep telling myself,
its all in my head, it's not that bad.
Others will not make me feel,
I deserve support.
At the end of it all,
I don't deserve any empathy or sympathy.
I can not believe that you understand.
Because when I see how you look at me I think,
Am I chronically ill?

alone

Where to start I feel alone most of the time! 

Although there are millions of people out there with the same conditions as me I can't help but feel alone. I feel like this at so many points in my week.

1) School run. I walk my son to school its half a mile there and half mile home again, and I have to do it twice a day. There are many things that make me feel alone about school run. Most of the mums at the school gates have hair done, makeup and well dressed. I turn up with unbrushed roughly tied up hair, no makeup and whatever clothes I can find that are comfy for my bloated endo belly and walk to school in. I feel out of place like I don't belong, I want to melt into the background but for my son, I socialise with the other mums of his friends. Also because some days this is the only adult contact I get (apart from husband). I also have to stand in the playground waiting for them to open the doors. By the time I get to the school, I am already in pain from the amount of walking I have done. then standing waiting to go in adds to this, I am aware that I need to walk home still. I'm stood there wanting to cry putting on a brave face feeling so alone while surrounded by people.

2) At home. I can go days without seeing another adult other than my husband and I sometimes feel like I'm going crazy. There is only so much toddler talk you can take before you go insane. I want to be one of those mums that go to mummy groups and makes mummy friends. But there are many reasons why I don't. I worry about being mummy judged because of the fact that some days when I'm feeling unwell I just stay at home and have a sofa day with the kids. I worry if I will cope with being up and about, and what people might say when I feel unwell and don't turn up or go home early. The times I do open up people just don't seem to get it, they seem to downplay what I'm going through. I don't know if its lack of understanding of what I have or experience. or if its that the topic makes them feel uncomfortable. but either way, it makes me feel alone.

3) Friends. I feel more and more that my illnesses are causing me to lose friends. I don't know if its because I go out less or something else. I try to stay in contact with all my friends and try to be honest about how I'm feeling, and how my health is. But I tend to get the response I hope you get better soon, and then they either move away from the conversation to a new topic or stop talking to me. I end up feeling like people don't understand my illnesses and how it effects me or that they don't want to know. I try to be honest then feel like my being honest is not wanted so I stop talking about it again. This, in turn, causes me to feel more and more alone until I just want to cry. I am now feeling like I don't have any best friends anymore, I feel so alone and when I feel low I don't know who to turn to.

4) The internet. This makes me feel very alone at times the culture of knocking others down rather than building each other up. The fact that people shame you for not being the perfect example of a mum. I have tried to open up on my personal social media about my conditions and on the whole, people don't even acknowledge my posts. This makes me feel alone as it's like my illness doesn't exist or that people don't want to acknowledge my illnesses. Sometimes I want someone to respond to my posts and try to understand. The one good thing about the internet is the other chronic illness people I have met and we support and build each other up. But even this has elements were people compete with one another, whose condition is worse whos had more worse days. I don't get this and wish as people we could support and be positive rather than negative.

I wish I didn't feel alone so much and that I was coping better with life. At times I feel like I'm paddling in water to stay afloat and People are sailing past not making eye contact. (for fear of acknowledging there is someone who needs help) But each time I have a bad day I feel like I'm about to go under and this time I might not get up again.

Art work

I use Art to deal with a lot of my emotions around the struggle with endometriosis and have made quite a few in the last year. I find creating these very theraputic and help deal with the depression that rears it head now and again.

I sometimes draw about the physical feels attached to having Endometriosis and Adenomyosis 

I use different things to describe Endometriosis and using weeds often works well. this is brambles that grow around everything and causes pain. I often find using weeds works best as its something everyone understands. I liked this image as its more anatomically correct and with the black brambles making it more shocking by the contrast.

 These two images are representing the different types of ways I sometimes explain the type of pain I experience. I think explaining pain is a very hard thing to do especially when its different types of pain at the same time. 

This is an acrylic painting with cuts in the canvas to represent the ongoing pain that surgery after surgery cause. Surgery is not always the answer as sometimes the scars left from surgery can give the Endometriosis more places to grow. it can also cause more adhesions and pain. It also represents when the pain of Endometriosis feels like your being cut open and ripped apart when you have a flare up.

Then the next type of images is representing the emotional side of having a chronic illness.

This image represents Miscarriage and how each one I felt like a small part of my heart went with the miscarriage and the baby I never got to hold or meet. Miscarriage is a taboo subject and something I have experienced and kept to my self for years. I felt ashamed and like I wasn't allowed to tell people.












This image is the depression and loneliness that a chronic illness can make you feel. I sometimes feel very alone. I was diagnosed with Endometriosis 12 years ago but most of this time I kept it to my self and didn't really talk about this. I felt so alone and weird as I didn't know anyone else with it at the time. I have now met so many more women through social media and support groups.

I often feel like I wear a mask when out and about. I show a smiling happy person when inside I'm in a lot of pain and struggling just to get through the day and deep down I want to cry. I used to say I'm ok when people asked me how I am. I know say "its a good day" or "its a bad day," I think this choice of words makes people realise even if today is ok I sometimes have bad days.

 This is Crampy a little character I created to lighten up some of what I do and think as sometimes it can get a bit dark in my mind. Crampy is a sad womb who has Endometriosis.











Then there are the Educational images.

The anatomical images of what adhesions, Endometriosis and adenomyosis look like. it shows the adhesions between the tubes ovaries and womb, the womb attached to the bowel. Then endometriotic cysts on the ovary, and Adenomyosis

 These next few images are the different stages of endometriosis. I use weeds to explain how endometriosis grows and that just because you cut the top off the weed (the visible part of the endometriosis) doesnt mean you got it all, it will keep growing. there are 5 stages of endometriosis and each weed represents one of the stages.

This image goes with the one above. The leaf shapes represent the different levels of pain. With endometriosis, the stage you are does not link to how much pain you feel. there could be one woman with stage 1 and the highest level of pain. But then others have stage 4 and almost no pain. I designed this so you would take the size of the weed (stage of endometriosis) and then change the leaves to match the level of pain you experience.

 This sketch is what I imagine Endometriosis would look like during surgery if it looked like it felt.

This image is just some of the things I experience as part of my Endometriosis.

misscarriages

The first time I ever had a miscarriage was back in 2011 I was engaged and had recently had a Mirena coil fitted (about 7 months) we were on a scout trip to Luxemburg and it was 2 days into the trip I reaslised my period was week and a half late (maybe more my periods had not been regular). I decided I would take a test when we got home and think about it then. But few days late I started bleeding it was the most painful period I had ever had. I dismissed this as just heavier because it was late. that was until I went to the toilet and wiped and there on the tissue was a small blob and I recognised this as a fetus about 6 to 6.5 weeks I didn't know what to do scouts everywhere I wanted to do something with this but couldn't so flushed it away. I told my partner straight away but I didn't tell anyone else for years. I felt ashamed like somehow this was my fault I had done something. I Had the coil removed straight away when I got home and went onto oral contraceptives until I Tried to get pregnant with my son in 2013.

when my son was about 7 or 8 months I was feeling really tired and we went out to truck racing. strange way to start a story but they are linked. I usually like the smell of fuel (years of working in a petrol station) but we were sat watching the trucks race and I was feeling more and more unwell by the smell. After a while, I had to leave, I remember walking calmly over to the toilets then the strong feeling came that I recognised. I ran to the toilet and was sick, I knew what this meant it was just like when I was sick when pregnant with my son.

we left the truck racing early and headed to the shop to get a test I was 2 days late but I had just put it down to after birth settling down. I peed on the stick and nervously waited when I turned it there seemed to be a faint line but not a strong line. We decided to go to the GP tomorrow and get a blood test done. but it felt the same as it had with my son, I started to imagine my life with a second baby what would life be like would it be a girl or boy.

The next morning I booked an appointment to see my GP in the afternoon now to patiently wait. I hadn't had the usual pre-period issues I would normally get and was still feeling sick. But then before my appointment, I started bleeding but heavier than usual and I recognised this feeling it was just like when I miscarried in 2011. When I went to the doctor and explained my symptoms and what had happened and He said I think you're having a miscarriage and best to take it easy and come back if things didn't settle down.

After this, I went back onto the bill I had been on before my son. It didn't help my endometriosis but it would stop me from getting pregnant. I wasn't emotionally in a place to think about a second baby after this, I was struggling enough with day to day life with an illness that doctors said I was exaggerating and a baby.

It wasn't until we decided to have a second baby that I had to deal with all the emotions of what could happen again. We had tried for a long time and then my period was 2 days late and I was feeling sick again, (same feeling I got each time I was pregnant). I couldn't be excited I just had to take a test, it was faint was it a line was it not. again I booked to see the doctor for the next day not sure to be hopeful or not. that evening the same feeling I had before I was having another miscarriage pain but no bleeding yet. The next day just before I went to see the doctor the bleeding had started. I saw my doctor who said again it was very likely a miscarriage and if the bleeding doesn't settle down to go and see the doctor.
The next month I fell pregnant again and this time I didn't have a miscarriage and was blessed with a baby girl.

sketch to represent my miscarriages

I felt in pieces. I felt like a small part of my heart left with each miscarriage, with every baby that could have been in my arms. It has taken me a long time to talk to anyone about these experiences as I felt I couldn't share my thoughts with anyone, I'm not really sure why. Just because I didn't share my struggle doesn't mean I didn't struggle. I also feel blessed to have my children I know so many women would love to have a baby and can't. seems like many topics around the female reproductive system are all treated as a taboo subject still. I hope one day women can be open to this, and support each other.