Surgery to end monthly pain threatening the fertility of 1.5m women

Surgery to end monthly pain threatening the fertility of 1.5m women

Surgery to end monthly pain threatening the fertility of 1.5m women

2:02 AM on 17th May 2011

Cured: Clair Victory with her son James. Clair suffered endometriosis, a painful condition that had affected her fertility

Cured: Clair Victory with her son James. Clair suffered endometriosis, a painful condition that had affected her fertility

When my periods first started at the age of 15, they were so heavy I’d have to get up several times in the night.

My mum was concerned, but a GP said it was just abnormally heavy periods and prescribed the contraceptive Pill.

I took the Pill every day all month, without a break so I didn’t have periods at all. But after six months, my heavy periods started again, even though I was still taking it .

We tried different types of the Pill, but the heavy bleeding would always come back. And by the time I was 18, I started having horrendous lower stomach pain, so I was referred for hospital tests including a laparoscopy, using a camera on a flexible tube to examine me.

I was diagnosed with endometriosis, which the doctor said happens when cells like those in the lining of the womb grow in other parts of the pelvis. Each month when I had a period, these abnormal cells outside the womb would bleed just like the tissue inside the womb. The bleeding was causing scarring and that’s what was causing the pain.

Since the Pill didn’t help, doctors tried monthly hormone injections to stop my periods. This worked for a while but then the pain and bleeding came back.

Doctors also warned me that my endometriosis could affect my fertility as scar tissue and cysts built up on the ovaries. They said I should have a baby early, while I still could, but I was only 18 and wasn’t in a stable relationship.

They told me the only way to cure the pain and bleeding for good was to have a hysterectomy, but I couldn’t bear to give up my chance of having children for ever. So I just went on taking anti-inflammatories and the Pill — but some days I was in too much pain to go out.

When I was 20, I met Darryl and two years later we married and started trying for a baby. I had to come off the Pill, so the pain was awful for a year.

As doctors had warned, I had problems conceiving and finally had my daughter Jenim through IVF in August 2004. After she was born, the pain and bleeding returned. On two occasions I went to hospital for strong painkillers.

Sometimes I was in too much pain to pick Jenim up or even stand. I got depressed, feeling I wasn’t being a proper parent and at work I had to teach sitting down.

I was determined to find something to help, so I scoured the internet and found Ashwini Trehan, a surgeon who’d pioneered a new technique for endometriosis.

He examined me and found a 1cm cyst on my cervix that the GP hadn’t spotted, and patches of endometriosis on my bladder, bowel, the outside of my womb, and my ureter, the tube carrying urine from the kidneys to the bladder.

Mr Trehan told me he could operate to remove the entire lining of the pelvic cavity where the endometriosis starts. It’s normally about 5mm thick but with endometrial scarring can grow to 3 to 4cm thick. He said if he removed it, new healthy pelvic skin would grow back with less chance of the endometriosis returning.

It meant I could try for another baby, but be free of pain and medication. I had the operation on October 10, 2009. It was six hours long and painful afterwards, but painkillers helped.

I braced myself, but suddenly I had light periods, with no pain, for the first time in 20 years — and just a few months later I conceived again naturally. James was born in September 2010.

Now I don’t need medication, and the horrendous pain and bleeding have finally ended and I can finally pick up my children. I wish I’d had this operation years ago.

Ashwini Trehan is consultant gynaecological surgeon at the Spire Elland Hospital in Halifax and Dewsbury District Hospital. He says:

Ten to 15 per cent of women are affected by endometriosis. It can run in families, and is most commonly diagnosed in your 20s. For many it’s a devastating cycle of pain, destroying social lives, sex life, relationships, and fertility.

Doctors don’t fully know what causes it but it happens when the lining of the womb starts to grow outside the womb, in the peritoneum, the membrane that lines the pelvic cavity. These patches of abnormal cells respond to hormones just like the cells inside the womb, so every month they start to change and bleed too.

But outside the womb, there is nowhere for this blood to go, just like bleeding under the skin — so there is a cycle of bleeding, inflammation and then healing which can be very painful. Scar tissue builds up which can even cause one organ to stick to another, which also causes pain.

This abnormal bleeding can also damage women’s fertility, because cysts or abnormal sacs can grow on the ovaries, and cysts and scarring can interfere with the release and transporting of the egg and the womb accepting it.

Doctors can try to treat endometriosis with medication such as the contraceptive Pill to prevent menstrual bleeding in these areas, or by giving male hormones as tablets or injection to stop women menstruating. But these treatments all have side-effects, and work for just a short time, because they suppress symptoms and are not a cure.

For advanced stage disease, doctors can perform surgery, cutting away the patches of pelvic skin which look abnormal. However, the peritoneum is the source of endometrial cells, so if you take away only patches of it, many of these abnormal cells will be left behind and are likely to grow back and spread onto the ovaries.

It’s also possible to burn off the endometriosis with a laser, but it treats only the top 5mm. Endometriosis goes much deeper than this and in up to 50 per cent of cases it returns within five years.

A new operation I pioneered over the past decade, called total pelvic peritoneal excision, means removing the entire peritoneum (which then grows back healthy). All the endometriosis is removed, and so are all the sites where it can grow back, so endometriosis is unlikely to return. Women are free from pain but keep their fertility. Since I began performing this operation in 2006, none of my patients has experienced any recurrence.

The operation takes between two-and-a-half to eight hours, depending on how extensive the disease is, under general anaesthetic.

First I make a 10mm incision just under the navel for the laparoscope, a camera on a flexible tube which projects images back onto a screen. I make two more 5mm incisions, to put in surgical forceps and scissors.

I pinch the skin of the peritoneum with forceps and cut it away with the scissors, working around the entire peritoneum to loosen the skin and patches of endometriosis and then peel it all away from the bladder, bowel and ureter — then I cut it into strands and pull it out via one of the smaller incisions. In Ms Victory’s case I also removed a cyst.

The operation has all the usual risks of surgery — infection and bleeding. But most women can go home the next day. I’ve now done around 700 of these operations, and most women find their quality of life is very much improved.

The operation costs 7,000 to 9,000 privately and to the NHS.