Jacqueline's Story

I have suffered from endometriosis and PCOS related symptoms since I was 11 years old. Unfortunately, I was only diagnosed at the age of 26 after being referred to a fabulous gynaecologist who sat up, took notice and believed in what I had to say. I have never had regular periods. In the very early years of menstruating, I would bleed very heavily for weeks on end, then not have a further bleed for six months. The worst case was when I stopped having periods for about nine months, and I started to develop debilitating lower abdominal and pelvic pain.

I was told by my GP that my periods would settle down, and that as I started my periods at a young age it was normal they would take a while to regulate. By the time I'd reached 14, things had got progressively worse; the constant pain had become unbearable and my periods stopped completely. This lead to constant bloating - I looked like I was carrying a baby.

Between the ages of 14 and 18, I took various different contraceptive pills. Some worked, some didn't, some had awful side effects and others caused my weight to rocket. Some even caused me to suffer from constant breakthrough bleeding or even have two or three full periods a month - all in all, no real relief except a load of hormones pumped into me.

By the age of 18, I had constant lower abdominal pain, cramping all the time, vomiting (and if not actual vomiting, retching constantly). Back to the GP it was. My mother was told that I was possibly making myself sick for attention, or that I may even have a stomach ulcer! I was sent for an endoscopic examination to rule in/rule out the early onset of a stomach ulcer. After being refused anaesthetic or anything to numb my throat to swallow the scope, I was told to stop crying and calm down so that I could swallow it. Guess what? No ulcer was found. I was prescribed Gaviscon and Losec and told to try and stop being sick...

Around about this time, I had an abnormal result from a smear test, so I was sent for another one; it reported the same result, this time with an abnormality of CIN II. For those of you who may be unaware, these abnormalities can lead to cervical cancer if untreated.

All the while, the pain continued. Oh good, I foolishly thought - now that they have found the problem and are going to treat it, perhaps the pain will go away? The result was a number of degrading treatments to remove the offending cells over the course of a couple of years. The pain subsided temporarily after the procedures, but came back with a vengeance and often more aggressively. All the while, menstruation (either the lack of it or sudden bursts of heavy bleeding) continued.

I was forgotten about in terms of these issues between the age of 21 and 26; the Internet was still not commonplace and ‘women’s problems’ were still a taboo subject ten years ago. There was little understanding, very few support mechanisms in place and lots of non-belief. Not once during these years was I offered any sort of pelvic ultrasound to have a look. Nobody mentioned PCOS, and nobody mentioned endometriosis – I don’t think that I'd even heard of it.

I tried unsuccessfully to conceive in my mid twenties for three years. By this time, I think I subconsciously knew that I had a serious issue with my fertility. I had given up on the Pill years before because it was wreaking havoc with me in so many different ways. The inability to conceive was certainly a contributing factor in the demise of that long-term relationship.

When I was 26, I piled on weight. All of a sudden, I became lethargic, craved sugar, was urinating frequently and quite frankly, could not get out of bed in the morning. Other days, I would shake uncontrollably if I got hungry and didn’t eat quickly enough. These symptoms were the start, quite by fluke, of how I finally got diagnosed!

I was sent for blood tests, which showed abnormally high levels of testosterone. Around about a year before, I noticed that I had developed what is best described as thick wiry hair in my eyebrows, lip and underneath my belly button. It was awful. I felt like an outcast and very unfeminine. I didn’t know what was I was turning into. Still the pain persisted, still the bleeding was irregular.

After the tests were inconclusive, I was referred to an endocrinologist, who I have got to thank for supporting and listening to me, and for helping to move me on medically. After going through all the test results, he asked did I have any menstrual problems. This was the FIRST time that any medical practitioner had actually asked me this question! Off I reeled my then 15 year history...he was shocked and asked me whether I had heard of a condition called PCOS. I hadn’t a clue what it was, but he explained the symptoms and it was almost like hearing a complete rendition of my symptoms over the past 15 years.

The Endocrinologist suggested that I have a pelvic ultrasound. My NHS hospital had a huge waiting list for non-maternity related ultrasounds, so I bit the bullet and paid to have a private scan. It was the best money I have ever spent, and this is where I first saw my reproductive system - two ovaries riddled with small cysts - and was given an initial diagnosis of PCOS.

I was referred to a consultant gynaecologist 10 years ago, who I am still a patient of today. I have never been discharged and am one of her longest standing patients. She is the most helpful, understanding medical practitioner I have ever met - she is a credit to her profession.

After discussing my chequered history, the first thing she did was prescribe me Metformin, the drug for diabetics. My gynaecologist was an early pioneer of Metformin being used to help PCOS sufferers and after getting over the initial awful side effects, Metformin helped regulate my weight issues very quickly as well as curbing the diabetic type symptoms (frequent urination, sugar cravings etc.). This initially helped to stabilise menstruation and I was having probably the most ‘normal’ periods that I have ever had.

This continued for a few years but the pain was gradually returning. Coupled with this, I began to develop persistent UTI's, recurrent cystitis, symptoms of frequency as well as an awful lot of nocturia (waking up to urinate persistently); my gynaecologist also referred me to an urologist. Pelvic exercises helped and on top of the Metformin for the PCOS, I was prescribed Amitryptaline for the frequency as well as Trimethoprim to reactively treat the persistent cystitis. I have only recently learnt that bladder problems are a strong factor for endometriosis sufferers.

Things were going from bad to worse and I wasn’t getting any younger. In 2005, at age 30, my gynaecologist performed my first ‘lap and dye’ - I think she had a sneaking suspicion that I was an endo sufferer before she performed it. She explained that the dye was used to ensure that my fallopian tubes were not blocked and to also to see if I was suffering from endometriosis. During that initial laparoscopy, she drilled ovarian cysts on both ovaries as well as diagnosed and lasered endometriosis on my left ovarian area as well as in the Pouch of Douglas.

I know that this has been a very long winded story, but I feel that I want to share it so that other young women do not have to suffer the indignity that I did in my teens and twenties before I was finally listened to.

The Mirena coil has helped me enormously and I still have it today. I have no bleeding and sometimes just some breakthrough spotting, I have tried every single birth control pill and every single combination of hormones the pill can offer - none of them have been successful.

Endometriosis has been lasered and removed five times, but still it persists and comes back. I have been successful with containing the PCOS (or should I say, my gynaecologist has), with a combination of Metformin as well as ovarian drilling. The PCOS has never returned on my right ovary, albeit, it has been recurrent, but milder on my left ovary.

It is the endometriosis that has been my real enemy over the last 25 years. I had to have a very realistic discussion in April 2009 due to the effects of the recurrent endometriosis. My fertility and my chances of conceiving naturally are severely compromised - things you don’t even consider in your late teens, twenties or even early thirties.

My gynaecologist and I talked about all the options available to me (I have no children and have never conceived). I asked about the feasibility of removing my left ovary because it appeared to be the site of most of the problems. She felt at this stage that it would be the last resort and to keep both my ovaries whilst I still can.

I am not in a relationship and am not even sure that I want children, but I know I don’t want the option taken away from me. Clomid, the fertility drug was muted, but it was felt that in terms of the state of my unreliable reproductive system, that my only real option was IVF for conception. Here in my Health Authority, I get two attempts - but I have to have had my first cycle of IVF on or before my 39th birthday, leaving me three years for IVF treatment on the NHS. Not long is it?

I had my fifth laparoscopy in October 2009, complete with some bad news: my left ovary is fused to my womb. It is bulky, still very cystic, unhealthy looking - this is clearly the source of the now crippling, random pain I feel. I can count on less than one hand how many pain free days I have had over the last three years. During recovery, she gave me the awful news that it was probably best now, at this point, that I have my left ovary removed.

I have been left with seriously compromised reproductive and fertility issues as a result of misdiagnosis in my teens and right up to my mid twenties. My ‘good’ ovary doesn’t really produce eggs, or any eggs of good quality. In order to improve the quality of the eggs in my one remaining ovary, I will continue to take Metformin with Clomid - it may take a few years for eggs to be of good enough quality for IVF. By this time, there could be a chance that I am too old for IVF on the NHS.

What I will say to anyone who suspects that they have this debilitating condition - PLEASE, do something about it - do not get continually fobbed off like I was - TAKE ACTION. You are never too young or old to be an endometriosis sufferer and one really doesn't consider the aftermath of what it can cause and the ultimate impact it could have on your fertility.

I have recently found comfort in some of the online forums available, particularly on Facebook, as well as the Endometriosis UK website. I wish that this information was available to me years ago - maybe I would have been diagnosed sooner.

I have made a number of friends from the various online forums who have been a constant source of support and help - and we help each other day to day. I am currently helping a seventeen year old who as yet, has been undiagnosed. I have shared this story with her and she has urged me to publish it so that other women and girls who suspect they have endometriosis can show it to their GP as an illustration of the symptoms that are attached to endometriosis.

I remain positive and strong - this condition will not beat me. I fill my life with positive things and positive people to counteract it.

Thank you for taking the time to read my story.

**UPADATE**

Since first submitting my story, I have had a left salpingo-oophrectomy.  My womb was fused to my pelvis, which was fused to my bowels.  My cervix is permanently damaged and I still have some endometriosis near to my kidneys which was too dangerous to remove.

This time thankfully, the endometriosis was excised rather than lasered away. All in all I am about 98% pain free - the best I have felt in years!

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