Second surgery

After just over a year from the first diagnosis, my symptoms were getting worse again. My GP referred me back to the gynae unit at the hospital.

When I went, I took a friend for emotional support. I explained that the pills I had been taking hadn't really been helping my symptoms and that the endometriosis had been getting worse. The doctor looked at me and said, and I will never forget his words, "How do you know you have Endometriosis?" I was shocked by the question and answered that I had had it removed when they removed my appendix. "Hmmmm", he replied, almost not believing what I was saying. I started to cry at this point. I was lucky to have my friend with me as she said to "check my notes, it will be in there".

He seemed put out by this but then he looked at my notes and said: "Yes you did have endometriosis removed, doesn't mean that's what it is." He was half acknowledging what I had said but also not being very helpful at the same time. He insisted on giving me a full physical exam which was painful and uncomfortable. It took a long time but eventually, he agreed to put me on the waiting list for a laparoscopy to remove whatever had grown back.

When it came to the day of my second surgery, I was feeling nervous. I sat on my bed waiting for the doctors to come around, before I went down the operating theatre. The doctor (a female doctor) came up and said: "I don't think you need this surgery, you don't have Endometriosis, you should go home." I insisted! By this point it was 2 years since my original surgery and I was in a lot of pain. After having had to fight to get the first doctor to believe me, here was another one telling me it wasn't Endometriosis and that I didn't need surgery. I stuck to what I knew about my body. Something was not right. It felt just like before my first op.

When I came around from surgery in recovery, the first thing I asked was: "Did they find Endometriosis?" The nurse said she didn't know but the doctor would come and see me soon. I slowly came around from the surgery and my stomach was really hurting. They gave me lots of pain meds and I felt a little out of it by the doctors came to see me. She walked over to me and said "We found Endometriosis and I have removed it." She then walked off. No apology for what she had said before my surgery. No acknowledgement that she had been wrong." I remember in the hours afterwards thinking: I know my body. I know how I feel. When will doctors trust what you say? It makes me so angry that they think they know your body better than you do.

Within a year of this surgery, my really bad pains were back again. My GP sent me to the gynae department again. I saw another consultant, who again asked how did I know it was Endometriosis. I remember thinking "Not again! Do they not even read my notes?" This doctor read my notes and acknowledged that I had indeed had Endometriosis removed twice. He examined me and explained it was most likely that the Endometriosis had grown back. However, he warned me that every surgery would raise my chance of miscarriage by an additional 10% over the normal 10% risk.  Having already had two surgeries, this gave me an additional 20% chance, meaning a total of 30% risk for me. This was large enough. He said to get referred back, once I had had my family, to get things sorted and again I was discharged by the doctors. But I knew I needed help with my symptoms and sought out help from a family planning doctor.

miscarriage statistics

Try to get some treatment

Now that I finally had a diagnosis for my condition (I had at this point had it removed twice), it was time to try and get some better help than just surgery. My GP said "you're already on the pill, that should help". I was currently taking "Yasmin" and it was not helping at all. So after chatting with my parents about what to do, they said I could try a doctor who works at the family planning clinic.

I booked my appointment and went to the family planning clinic. I sat there waiting to see the doctor and hoping she would be able to help at all but was afraid that I might get treated like I had in the past. I walked into her room and sat and explained my problems. She gave me a pill to try but she made me feel like she didn't really care and was treating me like I was just after the pill so I could have sex.

It ended up that the pill she gave me didn't work and I had a few side effects too including an allergic reaction. I went back to see her again about 3 months later. This time she was much more supportive and compassionate about my situation and really listened to me. We tried a different pill, but it didn't work, and over the next year I tried 3 other pills. None seemed to help, and We ended up trying the Mirena coil.

The Mirena coil is a T-shaped coil with progesterone that is placed into the uterus. It was a little uncomfortable going in but once in place, I didn't notice it was there. However, after 5 months, I suspected I had fallen pregnant with the coil. I only told my (at the time) fiance that this had happened But at the time we were on holiday in Luxemburg. I planned to see my doctor when we returned home. However while still on holiday at I think around 6.5 weeks, I miscarried. This was quite a difficult thing to go through, especially when I saw the fetus on the tissue. Apart from my fiance, I kept it completely to myself for over 2 years, feeling dirty, guilty and in emotional pain. I told the doctor I wasn't getting on with the coil. It had made no difference to my symptoms, plus I was afraid of what might happen again.

The doctor was feeling at a loss for what to try. Because I had had allergic reactions to some of the pills I had taken she didn't want to give me the injection. I tried a pill that was fairly new to her - Qlaira. Like all the others, it didn't make a whole lot of difference to my symptoms but I stayed on it as I didn't want to fall pregnant again. This would be all the medication I would take for a long time.

Diagnosis of Endometriosis

[I have recently been reading endometriosis UK's book about endo and read how to prepare your self for an endometriosis diagnosis while being tested and/or having an investigative laparoscopy. How normally a doctor will tell you what they are looking for during tests to prepare you. But I was not being investigated because my GP wouldn't acknowledge that anything was wrong with me.]

I had not been seeing any gynae doctors when I got my diagnosis and was not prepared for it at all.

I was 21 and suddenly got very ill, my temperature went really high and I had a really bad pain in my stomach. I had barely moved off the sofa all day and by late afternoon my parents decided that something was not right and rushed me to A&E.

In A&E they did blood tests and sent me for an x-ray, they decided that they thought it was most likely appendicitis and sent me to the emergency assessment unit for monitoring while they waited for a bed on a ward. In the night they found a bed for me but it was on the man's bay as they had no room on the woman bay. For a young woman who had never stayed in a hospital to have men all around me was scary.

In the middle of the night, I got worse and the doctor came and checked on me. I didn't know at the time that they had made the decision to take my appendix out the very next day. It was quite early the next day and I got taken down to surgery.

When I awoke from the surgery in the recovery I was in a lot of pain. They put me on a Morphine drip and once I was more awake they took me back to the ward. I had a drain in my stomach and felt very unwell, I ended up needing to have a catheter as a mix of the surgery, swelling and anaesthetic had caused me to not be able to pee. I was feeling emotionally all over the place.

It was the next day when the doctors came around to talk to me. They said they had removed my appendix and had found some Endometriosis on my womb, and removed it, given me a drain as I had a lot of fluid in my stomach cavity. In my morphine bubble, I couldn't quite understand what they were saying but asked what it was. They explained it where the lining of the womb grows outside of the womb. I remember the doctor saying the only way to cure it is to have kids but I wouldn't wait too long as it can make having kids difficult.

Now suddenly I was left with a medical condition I had never heard of and the only cure was having kids and I shouldn't wait or I might never have one. This was a lot to take in and felt it wasn't fully explained to me and I didn't feel ready to deal with this. No one had talked about treatment to help I was left with my family with very little explanations or support.

Now I know that what the doctors had told me that day was wrong. Having babies won't cure it. there is no known cure, all they can do is try and ease your symptoms with pain meds, hormone treatment and surgery.

please see links for endometriosis UK website and Amazon where you can purchase their book (just where I purchased I'm sure its probably available in other places.
https://www.endometriosis-uk.org/                                        Endometriosis uk book

first time seeing doctor

After a year, I started to see that something was not quite right about my periods. They lasted 7 days and the first 4 days were really heavy. I would have to use the highest absorbance tampon and the heaviest strength night time pads. yet I still had to change both every 45 - 60 minutes. I also had irregular periods 4 to 5 weeks between them. I had to carry stuff all the time as I was never sure when it would arrive.

I decided that I needed to see a doctor, I booked to see my GP and felt nervous about discussing this with a male doctor. But I told myself he's a doctor he hears this all the time, He will be able to help. I didn't realise how wrong I was.

I explained how heavy my periods were, how long they lasted, and about the pain level that I get. My GP nodded along and then looked at me with no compassion and said "you just have heavy periods, take painkillers" He expected me to just accept this and dismissed me very quickly. I didn't know what to do or where to turn, so I suffered in silence and just gritted my teeth and got on with every month.

Looking back I can't believe how quickly my doctor dismissed me as It clearly wasn't normal to be experiencing what I was.

After two more years, I went back to the GP. This time I really felt sick waiting to see him, afraid of being dismissed a second time by the doctor. I wasn't completely wrong to think this. Explaining my issues again, the doctor again nodded along. Just said "well I guess I could give you the pill should stop your periods, although you might get a small amount of spotting once a month" I was prepared for something to get better, I was excited at the prospect of feeling a lot better. Only the magic Promise never came and I felt no difference other than that they were a little more regular than before but still not great.

After this second bad experience with the doctor, I decided to give up seeing my doctor and just live with it.

my first period

Knowing what I know now, really my first period was the first sign that something was not right. I have been thinking about my first period a lot and it really was worse than what most of my friends experienced.

I remember waking that day in pain thinking maybe it was something I ate giving me wind, I dismissed it and went to school. by break time the pain was worse and I hoped it wasn't a really upset stomach, but I went to French class. Sitting in French class and all of a sudden I felt a whoosh of fluid and felt like I had wet myself. I went up to the teacher and asked politely if I could go to the toilet and she said firmly "No you have just had break sit down" suddenly I could feel the eyes of the whole class on me. I quietly explained I didn't feel well and really needed the toilet she gave a look that said you're making a fuss but ok. I have never moved so fast down the corridor without running.

I get to the bathroom and pull my underwear down and they are soaked with blood. I knew what periods were mum had always been very open about her body and I had an older sister, but this seemed like a lot of blood. After all, the school had said a woman loses an eggcup of blood over her whole period usually around 4 to 5 days. I quickly wiped what I could and rolled up a whole lot of tissue and put it in my underwear. I tied my jumper around my waist and took myself back to French class. Too embarrassed to get excused again I crossed my legs and waited until the end of class.

After French class, it was lunch I went to the front office and said I don't feel well I need to go home. the reception staff all women asked what it was could they help, but I was too embarrassed to say what it was or why I needed to go home. after all, this is what every woman went through every month so why was I so upset. they rang my dad and he came to pick me up (my mum worked and my dad was at home)

I got in the car and burst into tears. I was lucky I was close to my dad and could be honest with him about what was happening and how upset I was. he calmly explained it wasn't a problem it was a good thing meant my body was working as it should and there was everything I needed at home. When we got home he ran me a bath to try and help with the tummy pains and make me feel cleaner after leaking into my clothes. while I was in the bath he got me clean clothes and pads. my dad helped my first experience get a bit easier, but it was painful and heavy. I never felt like my periods were normal but it wasn't something that girls talked about easily or even at all, I couldn't find out quite how different mine were to normal.

welcome

welcome to my blog and my journey with incurable invisible illnesses.
I will share my whole experiences here from first symptoms to diagnosis and the journey as I go trying to learn to live with these illnesses.

I have 3 illnesses that affect my every day.

1) autoimmune - I am allergic to one of my hormones not sure which yet as I am currently awaiting further allergy tests.

2) Endometriosis - I have various organs stuck together, I get pain every day

3) Adenomyosis - this one is a new diagnosis for me and I'm not fully sure how bad or where in my womb it is.

I'm not writing this blog to get sympathy or attention but to raise awareness of these illnesses and support others going through the same thing.