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Endometriosis-A personal perspective

By Edited Jun 11, 2015 1 2

Personal background

I was relatively young when puberty took hold. I started menstruating at the age of 11, which at that time, was young for some girls. As long as I can remember I experienced difficult and painful menstruation.

In my twenties and thirties an undiagnosed Thyroid condition finally was diagnosed. I received treatment and many of my menstruating problems eased and were put down to my thyroid disorder. The thyroid condition reoccurred a couple of times until eventually I underwent radioactive iodine treatment and this seemed to finally get things under control.

However, in the mid 1980's my periods became even more difficult. Being in my mid to late thirties by then, the Doctors considered that I was having an early menopause, or was just a cry baby I guess. Eventually I returned to my doctor again, however this time I found a much younger, more up to the minute doctor, who referred me to the local gynaecological hospital for tests to see just what may be the problem.

Initially a young trainee doctor, having remarked that I looked very well, and done the dreaded internal examination, told me that nothing appeared untoward. As I told him, I looked well as I had just returned from two weeks abroad and had a lovely tan. This was obviously why I looked so well, but I had actually been very unwell whilst on holiday. I had bled for the whole of the two weeks and this, to say the least, had put a dampener on our vacation.

Confirming the diagnosis and additional information.

The consultant agreed to admitting me for day surgery so that I could undergo a laparoscopy. This examination, under general anaesthetic, was keyhole, day surgery and enabled the surgeon to view inside and around my womb. After the surgery I was asked to return in three weeks to the outpatients for the results. I knew this meant that nothing serious had been found and was almost expecting them to refer me to another department, or simply say that nothing was wrong, yet again.

I was therefore quite shocked when I returned and was told that I had a mild to moderate case of endometriosis. Having no idea what this condition was I was given some leaflets, had a further appointment made and was asked to return to discuss the alternatives as far as treatment went.

Helpful diagram
This is what I have learned about endometriosis since my diagnosis:-

  • The medical world is still unsure just why some women develop this condition. However it is nothing that you have or have not done.
  • When you menstruate each month the patches of endometriosis that you have, will bleed also, as you shed the lining of your womb. These patches may be outside of the womb and can even be on other organs, or in the lungs.
  • When these endometriosis patches bleed, where there is nowhere for the blood to flow away, they can cause what are called 'chocolate cysts'. These can cause further problems by eventually bursting.
  • If you have endometriosis you may be infertile. However, women who have had children can develop the condition at any time.
  • Once oestrogen levels decline, with the menopause or by treatment, these patches shrink away.
  • Some people with severe endometriosis have few symptoms, whilst others, whose condition is not so bad, may have extreme pain and heavy bleeding.
  • Marilyn Monroe was a sufferer and apparently would scream in pain.
  • There is an endometriosis society in the UK. I saw their details on the hospital leaflets and joined for a while. They provided much more information than the hospital did.

My treatments and those available

Having returned to the outpatients I was given a few choices. These days doctors are reluctant to carry out an hysterectomy unless it is essential. If you have an hystero-salpingo-oopherectomy, or total hysterectomy, you will not be able to take HRT. My doctor tells me that with most HRT treatments there is the chance that the endometriosis will return. Damn those hormones. Some patients are offered a partial hysterectomy which leaves the ovaries in place.

I was offered initially a course of hormone treatment, which was an absolute pain. I had a constant period for six months, suffered depression and generally felt moody. When this treatment finished I was offered a different course of hormones. This involved an injection once a month for six months. The injection was Zoladex, it is also used to treat men with prostate cancer and was injected into my belly. I dreaded these jabs and would come home black and blue, until finally one kind doctor used a local anaesthetic first.

This treatment gave me a temporary menopause for the whole six months of the treatment and was almost heaven. The problem was that I had the hot flushes, mood swings and weight gain associated with the menopause, but I was only just 40. This treatment also weakens bones which is only partially recovered when the treatment stops. The beauty, however though, was no periods for six months.

My first period after this treatment ceased was hell and then things settled down. Everything seemed fine for about ten years but with the onset of the menopause I begun having further problems. I will not go into details other than to say that my periods were excessively heavy. I will let you use your imagination. I became terribly anaemic and was referred back to my gynaecologist. I went in for a further laparoscopy and at the same time I had a hysteroscopy, D and C and microwave ablation. This microwave ablation is something fairly new. Ten years earlier I had enquired about this and was told it was not available in the UK, and not that good anyway. How times change.

I went in as a day patient and as usual was not very well. I always struggle a lot with anaesthetics. However, I was home the same day. Initially I had a few problems, with some strange looking discharges and then nothing. My age and this treatment has finally, hopefully, seen this condition off.


Overall my advice, if you have such problems, is don't let your doctor poo poo you. YOU know how you feel. Endometriosis cannot be seen on an ultrasound scan or x ray. It has to be seen by the naked eye as via a laparoscopy. Although, as far as I am aware this condition is not life threatening, it can certainly screw your life up. It can make sex painful and so affects relationships and the like.

I read somewhere that most patients suffer with this condition for about seven years before they are diagnosed and that was me. If you go to your doctor and he says that there is nothing wrong with you, without making the appropriate investigations, do not leave it there. If the symptoms continue, return and demand investigations, then insist that your doctor takes your concerns seriously. The sooner you start a course of treatment the better. Endometriosis can affect your life in so many ways the sooner you get sorted out the better.

Treatments and diagnosis are changing for the better all the time.

Good Luck



Dec 14, 2009 9:20am
Gosh...thats awful, men get it so easy.. they havent a clue. You had it tough, which makes you wonder what our parents went through as doctors didnt know much at all back then. I had a hysterectomy at 40. Because I was so aenemic. Lost too much each time. Wish I had had it ten years before.
Dec 14, 2009 11:18am
Wish I had been given that option but it was not appropriate. Now I am told I have a uterus full of fibroids. Yes men get of light in some ways.

Medical knowledge is improving so much these days, which is good news for the young.
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