Our member Niki Dally’s story in The Guardian and The Independent’s endometriosis features.
Niki’s story was also featured in The Independent.
Sadly, Niki’s story is heartbreaking and far, far worse than the brief coverage allowed. Here it is in more detail.
* I live in South Wales, where proper treatment for endometriosis is very poor and hard to come by.
* My endo symptoms started when I was 11. They included heavy periods, with clots and terrible cramps, lasting for 10 days or more. I was put on iron tablets because I was so anaemic. I also experienced sharp stabbing pains at certain times of the month, and nausea / vomiting which gradually happened more and more often. I was prescribed anti-nausea medication to help deal with it. I had constant constipation and / or diarrhoea, and painful stomach cramps nearly all the time.
* I visited my doctor many times and was told I had IBS, or cysts, eating disorders, depression and sent on my way. I was even admitted to hospital at age 14 because they thought I had appendicitis but nothing was done to investigate.
* Finally, after ten years of constant pain, awful periods, constipation and diarrhoea, missing school / work, and pain during sex, I was allowed to have a diagnostic lap, to see what was going on. This was only because I couldn’t get pregnant. The gynaecologist found endometriosis and treated it by burning it. I have since learned that this does not treat disease, but only burns off the top surface, leaving behind lots of scarring, and often disease underneath. Non-specialists regularly burn endometriosis, but, in fact, this can make things worse as it leaves behind disease and also adds painful scarring or adhesions to the mix. Not only this, it can make endometriosis difficult to spot for future non-specialists, which is what happened to me.
* My pain and symptoms continued after this operation.
* The doctors said it couldn’t be endometriosis, because it had been treated – but just to check, they gave me strong hormone medications called GnRH analogues (Zoladex) to see if that reduced my pain. It didn’t, but it gave me awful side-effects, including hot flushes, head and bodily aches; my hips throbbed with pain, and terrible mood-swings. My periods did stop, but the constant pain and aching didn’t. I wasn’t given any HRT (Hormone Replacement Tablets) to stop these side-effects, and after the treatment stopped (after a few months) I felt worse than ever.
* After this, I did fall pregnant but the pain and symptoms carried on during the pregnancy. I had to have an emergency C-section.
* The pain and symptoms continued to get worse afterwards, and I managed to persuade the doctors to do another laparoscopy. This was done by another non-specialist. He said he found ‘inactive endometriosis’. I have since learned that there is no such thing as inactive endometriosis. What this surgeon saw was the burned, scarred areas from the previous operation, underneath which there is very active disease. He mistakenly believed it was inactive, he didn’t remove it. Instead he put in the mirena coil.
* The coil caused me even more crippling pain but the surgeon refused to remove it. Finally, after many months, a nurse found it wasn’t even in the right place and took it out.
* As I no longer had the coil but was still suffering terrible symptoms, they gave me Zoladex again. This time, the side-effects were a hundred times worse than before but whilst I was taking it, I fell pregnant again. Again, I had to have an emergency C-section. We were shocked to find that my daughter was born with a congenital problem – three kidneys – and, having done research into the dangers of Zoladex to unborn babies, we think it was down to that.
* During this C-section, the doctors found wide-spread endometriosis, scarring, and adhesions. They were so shocked they asked me if I knew I had it. I found out many months later (they didn’t give me any information at the time) that they had had to unstick my uterus from my bowel, and reconstruct the ligaments holding my uterus in place, as they were so badly damaged by endometriosis and adhesions. They did not treat or remove the disease however.
* After the C-section, the pain was worse than before, but now I couldn’t stop bleeding. I was desperate for my gynaecologist to investigate and do another laparoscopy, as I knew something was very wrong inside me. However, the only way I could persuade them to do one was to say I wanted to be sterilised (even though that wasn’t true). Finally, after 2 years, 9 months of begging, they agreed.
* When I came round from the operation, I was told they hadn’t been able to perform the sterilisation, but not given a reason why. I was given no follow-up appointment with the gynaecologist who did the operation, but instead had to see a stand-in. He said that even though he felt I was too young, I should have a hysterectomy. I was told I had endometriosis and adhesions everywhere and this was why they couldn’t perform the sterilisation. They couldn’t access my tubes because everything was stuck together: my uterus was stuck to my abdominal wall; there was endometriosis in my C-section scars, in the area between my uterus and my rectum (the Pouch of Douglas), and it was on my ovaries and tubes. It was affecting my bladder and bowel. I was led to believe that a hysterectomy would cure my endometriosis, so I practically begged for one, believing both the doctors and the Wales NHS guidelines that said it would stop the disease and relieve my pain.
* In 2014, I had the hysterectomy and mesh put in to hold my bladder in place. Still nothing was done to remove the actual endometriosis. The gynaecologist believed – as do many doctors, supported by the Welsh NHS guidelines – that a hysterectomy would solve all of my endometriosis pain / symptoms without having to do anything about the actual disease. This is NOT true. I have since learned that it is the disease that needs removing, not healthy organs. I am still in terrible pain, and can feel the mesh around my bladder ripping because it is covered in adhesions. Now though, because I have no female organs left, I am told I don’t need a gynaecologist.
* Since the hysterectomy, I have had blood tests that showed my bone density is low, but nothing has been done about it; my pain continues just as bad as ever and so I have been put on very strong pain medications, which they now want to reduce in case I become too reliant on them. They don’t ease the pain very much anyway, but make me feel drowsy. I have also been put on anti-depressants. I am not clinically depressed, but depressed because of the pain and lack of care, and the fact that I have had to fight to be heard every step of the way. My everyday life is a terrible struggle, and I can’t enjoy time with my kids, even though I adore them.
* Since my hysterectomy in 2014, I have joined support groups on Facebook and discovered that there is a specialist BSGE endometriosis centre in Cardiff. This is the only specialist centre in Wales, compared to 45 in England. However, despite the fact that this centre is only 27 miles away from me, I have NEVER been told about it by my doctors. Since learning about it, I have asked to be referred there but, because it is run by a different health board, they won’t let me go. In Wales, patients are normally only allowed to go to hospitals in their area, even if they can’t provide the specialist care we need.
* My fight for proper treatment continues, over twenty years since it began.
*** Update January 2017, after a lengthy battle Niki is finally under the care of an endometriosis specialist, and waiting to have the surgery that she desperately needs to effectively remove all endometriosis.