A woman was told she would never eat or drink again after decades of endometriosis treatment which resulted in major complications following a hysterectomy. Lauraine Clarke was 29-years-old when she had her first procedure to treat endometriosis in 1991.
She said she had experienced crippling period pains for years, but it wasn't a condition which was known about then. Lauraine, now 62, said what followed was a yearly procedure where "chocolate" cysts caused by the endometriosis that built up in her abdomen were drained, a problem that only went away as she reached menopause.
However, in 2015, she underwent a hysterectomy as her doctor was concerned about masses that could be seen on a scan. Years of being "poked and prodded" in the same area had caused masses of scar tissue in Lauraine's abdomen, and due to the nature of endometriosis, where endometrium tissue grows outside the womb and attaches to other surrounding organs, Lauraine said it was as if her bowel just completed dissolved during the procedure. It left her with three fistula bags, and she was told by doctors she may never eat or drink ever again.
Read more: The signs and symptoms of autism in adult women
According to the NHS, endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. But it can also attach onto other organs in your body. In Wales, according to Endometriosis Cymru, the condition affects one in 10 women.
Lauraine's original endometriosis diagnosis came the year after she had a colonoscopy (a procedure which a doctor uses a colonoscope or scope to look inside your rectum or colon) for a bowel obstruction, which they didn't know was caused by endometriosis at the time. The year later, she had another operation which resulted in her endometriosis diagnosis. She was told by her doctor at the time it was the "worst endometriosis" they had ever seen.
"I used to have crippling period pains, but I didn't know there was a condition called endometriosis. My doctor at the time, closed me back up again and said there was nothing he could do."
Lauraine's endometriosis meant she developed cysts in her abdomen around her ovaries. It became a yearly occurrence that she would need to go to hospital to have the cysts drained through her abdominal wall. The cysts would regrow to about 11cm and the severe pain would restart which was when she would have them re-drained.. She said: "I didn't realise the damage it caused, but there was no other option really. All he was draining off was old blood, it was like black gunk, it was quite frightening. Some years it would be twice a year. I think in total I had it done around 30 times."
The procedure would require Lauraine to go under general anaesthetic. It meant that every year she needed time away from her job in local government and would struggle with childcare for her daughter. It meant that as a family they were unable to go on holiday as they couldn't get travel insurance.
Lauraine, who lives in Kidwelly was offered some comfort with being told that when she hit menopause her symptoms would ease, and they did. She said: "When I reached 50, my periods stopped and the cysts regressed. I stopped having the cyst aspirations. I even went on holiday for the first time in years."
Lauraine was referred to a new consultant who did a scan which revealed so much scar tissue, she said the consultant couldn't tell what they were looking at and it was recommended that she undergo a hysterectomy.
"My endometriosis journey ended in disaster when aged 55 I had a hysterectomy. Only then was the damage the repeated aspirations had caused, was revealed. My insides were literally fused together and my bowel perforated leaving me with an enterocutaneous fistula caused by the chronic inflammation. A fistula is an abnormal connection between, in my case, my small bowel and my skin, it’s awful to manage. I have three stoma bags and my health seems to be getting worse as time goes on.
"As a woman I feel totally mutilated and if I’m honest completely invisible. Endometriosis is thought to be painful periods but as so many women demonstrate, it’s so much more. A sometimes invisible, always destructive disease that causes deep infiltrating damage and scarring. My peritoneal tissues are so damaged that a repair to my bowel is too dangerous so this is probably it for me."
A few years after the 2015 hysterotomy she was told she may never eat or drink solids again. Thankfully, things did improve and she can eat food now but has to be extremely careful with her diet. Surgery to remove the fistula was attempted in 2017 but Lauraine developed sepsis and respiratory failure and almost died. She spent weeks in the ICU and the repair failed.
"I always knew the aspirations were merely relieving me of the pain of large cysts and not curative in any way, and maybe back in the day that was the safest option available to me, but I had no choice. Thankfully, hopefully, things have changed somewhat."
Lauraine added: "I think we have to keep speaking about our experiences in the hope we are taken seriously. I know my story is rare but when it happens to you, rare is meaningless. Women’s problems are real, often dismissed and sometimes the physical and psychological consequences of badly managed conditions are catastrophic. To make things worse when these rare complications do occur, there is little support which has massively contributed to my mental health problems. I’d just like to say to all the women out there suffering this awful disease is I hope and pray there are better treatments around these day and that you don’t have to wait too long to be treated."
There is no cure for endometriosis. Treatment for the disease aims to ease the symptoms. Some women are prescribed the contraceptive pill which stops ovulation and makes periods lighter and less painful for some. Other treatments include hormone treatment, which aims to limit or stop the production of oestrogen in your body, as oestrogen encourages endometriosis tissue to grow and shed. Limiting oestrogen can shrink endometriosis tissue in the body and reduce pain from endometriosis. But there are limitations to this treatment.
Many women with endometriosis end up needing surgery to remove or destroy areas of endometriosis tissue. The most commonly used technique is a laparoscopy, which is key hole surgery, to cut out and remove the tissue.
Finally, some women who do not want to get pregnant may opt for a hysterectomy, which is a major operation that will have a significant impact on their body The condition is extremely hard to treat, but is more common than people think. In Wales, there is only one specialist for endometriosis, and women are often left needing to pay privately for surgery to treat the condition.
Read next:
- Woman's incredible 10st weight loss leaves everyone in tears
- My post-natal depression was so severe I had to close my business
- Devastated couple lose baby girl after more than a decade of trying to start a family
- Women over 40 and single people won't get IVF treatment through the NHS in Wales in future plans
- 'I tried expert advice to eat 30 plants a week and this is how it went'
