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My periods started the week before my 11th birthday. They weren’t painful or heavy to start with but they were irregular and a bit of a nuisance, which I guess is pretty normal in the beginning. By the time I was 12 they had got much, much worse and were heavy and painful. The pain got so bad it was causing me to vomit and pass out, I was getting migraines, and I was missing school because of it. I would spend my time curled up on the bathroom floor waiting for the pain to pass. I went to my GP who decided to put me on the contraceptive pill and give me mefenamic acid (Ponstan). I also got tested for anaemia because the bleeding was so heavy, but that came back negative.
The pill seemed to help with the heaviness, but I still had the pain. I thought it was just one of those things and I was one of the unlucky ones. By the time I was 13 we had moved to a different area and I had a new GP. I spoke to them about it throughout my teens, and must have tried about 5 different variations of the pill during that time. During my GCSE's it was really bad, and I remember my GP saying to me it wasn’t normal to have this pain, and that he’d keep trying to help make it better. Sadly he left not long after that so things didn’t quite go to plan! I got stuck with a different GP and I think I just got used to being in that much pain during my period, I sort of gave up on finding anything that would make me better.
A few more years passed by, I started working full time and moved out of home. I carried on taking the pill and using ibuprofen and paracetamol to help with period pain, which I had just learned to put up with. When I was 21 the pain went up another couple of notches and I was finding it hard to cope with it again. I had to start taking codeine which only really took the edge off, but I managed. My job meant I was on my feet for 8 hours+ every day, and looking back I don’t know how I did it!
A couple of years later when I was 23, I had settled at yet another new doctor’s surgery. By that point I’d started to develop new symptoms; I was feeling nauseous most of the time and barely eating, getting stomach cramps and constipation. This wasn’t normal for me so back I went to the GP. They did blood tests and various other tests to rule out any gastrointestinal problems, which all came back clear, so I was diagnosed with IBS. I was given tablets including peppermint capsules to try which didn’t seem to help me at all. I was fed up, didn’t believe I had IBS, and felt I’d been fobbed off. Yet again I just put up with feeling rubbish!
I also started getting urinary infections (or UTIs). I say these were infections, but rarely would a test actually show any infection, I just seemed to have the symptoms of one. I was getting one or two of these per month for about a year, which was pretty miserable as I’m sure you can imagine. I had just got together with my partner after being single for a while, so it was sort of put down to being ‘honeymoon cystitis‘. This problem was never investigated and thankfully it stopped happening after about a year, although some of the symptoms would crop up again in the future.
It wasn’t long before the symptoms got worse again. It seems like every time I got used to a level of pain or some symptoms, another would appear and the pain would get worse! I started getting rectal pain during and about 1 week after my period. It’s hard to explain this pain, but it felt like there was pressure deep inside, and sitting down was almost impossible. I knew this was NOT normal. I asked the GP about this and was told it was common to have pain there as the organs are so close together, and had I thought about getting pregnant? I was only 24 at the time and hadn’t been with my partner all that long! I saw another GP about it a couple of months later and they were even worse, they told me it was probably constipation causing the pain and to eat more fibre. I was made to feel like a time wasting hypochondriac. I can’t stress enough how upsetting this all was. I knew what I was feeling wasn’t normal, but no one would listen to me. What could I do?
This was around the time I first heard of endometriosis. I Googled the symptoms and couldn’t believe how familiar it all sounded. By this point I’d started having pain during sex as well but I kept this to myself, I was embarrassed by it. I mentioned endometriosis to my GP who more or less dismissed it, telling me the only way to diagnose it was by having a laparoscopy which was an invasive procedure, and should be avoided. We’d continue to treat me with the pill instead, but I would start tricycling, so taking 3 packs together without a break.
Another year or so passed and I was still getting this pain, and the IBS symptoms were making me miserable. It didn’t seem to matter what I ate, I would get bloated and/or feel sick. Yet another trip to my GP beckoned. I managed to see a different one this time, and she decided to refer me to the hospital to have an ultrasound scan. I needed to have a full bladder for it, and I just happened to have cystitis at the time. Nightmare! Every prod and poke was agony. They mentioned they couldn’t find my left ovary, and they did an internal ultrasound for that reason but it was still nowhere to be seen. ‘Probably your bowel getting in the way’, they said.
The internal ultrasound was probably one of the worst of all the tests I’ve had done! The thing was massive, and they moved it around loads inside which felt truly horrible. They didn’t seem too bothered about my missing ovary. Needless to say, my GP told me the scan was clear and finally referred me to a gynaecologist. While I was waiting for my appointment I had a smear test done. I’d had internal examinations done before so I wasn’t too worried about it, although I knew it would be painful for me. The nurse told me that she could see a cyst at the opening of my cervix and I should tell my gynae about it at my appointment.
I was so nervous about my first appointment with the consultant and didn’t know what to expect, but I had high hopes that finally I was going to be listened to and taken seriously. The consultant was blasé about my symptoms, and when I asked about endometriosis he said it was unlikely I had it. He thought it was probably just ‘one of those things’. I really felt like I was wasting his time and that as a woman I just had to deal with this pain and other symptoms. He did however agree to do a laparoscopy to find out for definite. I told him about the cyst on my cervix and he asked me if I wanted him to check it! I couldn’t believe his attitude. He told me it was quite large and would need to be removed, so he would do it during my laparoscopy. My surgery was scheduled for 3 months later, and I felt sick with nerves. I was torn about what outcome I wanted, I knew that if it was endometriosis I’d be stuck with it for life, but if it wasn’t I’d still be stuck with the pain as there would be no explanation for it.
For various reasons my surgery was cancelled twice, both times I was literally in the gown and stockings waiting to go to theatre. I was already extremely emotional and on edge so by the 2nd cancellation I was gutted. By now I was also struggling with anxiety due to the fact I permanently feel like I need to go to the loo, both my bladder and bowel always feel full which is so uncomfortable and makes me panic when there isn’t a toilet nearby.
Finally my surgery was going to go ahead (age 27 at this point). I was going to get some answers! I had a bit of a wait as I wasn’t first on the list. It wasn’t my first operation but I still felt a little nervous about the anaesthetic, my heart was racing and I generally felt quite anxious. I had no idea how much pain I was going to be when I woke up, or what they were going to find in there. I walked myself to theatre and lay on the cold table; the anaesthetist was lovely and made me laugh before asking me to relax and putting the cannula in my hand. I’m OK with needles, which is quite handy as I must have had hundreds of blood tests done over the years.
Next thing I knew, I was awake and having a bit of trouble breathing and swallowing. I tried to feel my tummy to see how many incisions I had but couldn’t move my arms properly yet. I could hear them talking about the pain relief I’d been given, Diclofenac and Morphine. I was quite lucky that I couldn’t really feel any pain at all. It wasn’t long until the nurses were asking me to get up and dressed, then the consultant came in. It wasn’t one I’d seen before, he was a locum. I was told they hadn’t found any signs of endo, but that my uterus was very badly stuck to my pelvic wall. He also said my left ureter was very high up, and that he thought there had been a developmental problem with my uterus. None of this really made sense to me, not helped by the fact I was still woozy from the anaesthetic! I sat there on my own thinking “I’m a freak! I’ve got an oddly shaped womb! I’m not going to be able to have children!” and then came the tears again.
I was so disappointed. I didn’t understand what had been found, and I didn’t have the answers I’d been longing for, for so long. I was booked in for an MRI scan 6 weeks later, which was another one of the worst experiences of my life. I was in the scanner for 45 minutes, being told when to breathe and when not to breathe, and listening to awful chart music in one ear as only one earphone was working. A couple of weeks later I went back to the consultant to get my results, and finally he confirmed I have endometriosis. He said it was ‘very bad’ and that my ureter was stuck to something due to endo, and my bowel was involved. I would need open surgery but he had to discuss my case with a urologist first. More waiting! I went back a month or so later to be told there was no point operating as I’d probably still have pain afterwards. That was the urologist’s opinion which I thought was odd, surely the gynae should be deciding these things?! I asked if there was anything that could be done, and he said to keep taking painkillers, get pregnant (that old chestnut!) and that I could get a second opinion if I wanted to.
I was angry, upset, confused, disappointed, and felt completely hopeless. My family and boyfriend were furious and wanted me to make a complaint about the way I’d been treated. I decided to get a second opinion from a specialist endometriosis centre in London; I knew it’d be a long wait so I paid to have a private consultation with one of the gynae's who work there. I have to say it’s the best money I’ve ever spent! He was absolutely fantastic, and has given me so much hope. My appointment lasted 30 minutes, he examined me, although beforehand he acknowledged that he knew it would be extremely painful which was a first for me. It was amazing that someone finally ‘gets’ it! To my horror he said he could actually see endometriosis – I didn’t even know that was possible. He explained that I have deep infiltrating (stage 4) endometriosis, involving the ureter, left uterosacral ligament and rectosigmoid colon, and that my left ovary is very stuck to my pelvic wall.
He said it was clear that I needed to be managed at an endometriosis centre with a urologist and bowel specialist present. So now I’m waiting for my appointment in a few weeks and I really can’t wait to get started with my treatment.
Thank you for sharing your story. I'm not surprised you went for a private consultation after all the waiting the NHS has put you through! It really breaks my heart that there are young girls out there being told to get pregnant or have a hysterectomy when these surgeons and doctors know nothing about the disease - or not enough to be able to give effective treatment anyway. No one in the NHS ever seems to explain endometriosis in simple terms and it's hugely frustrating. I wish you so much luck with your next surgery, but it sounds to me like you're certainly in the best hands.
If you would like to contact Endo Star, you can follow her on Twitter @endo_star.
Can anyone relate to Endo Star's story? Have you experienced constant UTI's like cystitis or thrush due to endometriosis? Did you start out thinking that problematic periods were normal? Have you ever had to 'endure' an internal scan!?
Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at firstname.lastname@example.org along with a photo and I'll pop it on to here for others to read.