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.
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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.