This is my story about Endometriosis.

At the age of 12, almost 13, I got my first period. I actually didn't know what it was at first, we didn't have very good education in these matters at school!
My periods were horrendous! I suffered excruciating pain, along with spasms, nausea, vomiting, diarrhoea, very heavy flow, clotting, light headedness, backache, leg pains, a lack of concentration, irregularity & generally feeling crap. I would miss 3 days a month from school, those would be spent in bed with a bucket!

I tried every painkiller I could, but none of them worked for me, until I tried 'Feminax', this was really good, it didn't totally rid me of pain but I was able to do everyday things like most girls my age. I took this drug along with several other 'over the counter' painkillers until I was 16 & I couldn't cope anymore.

I had my first job & I wanted to be reliable. The doctor prescribed me Mefenamic Acid tablets which never did a thing. I then went on to have Tranexamic Acid, again, this never touched my pain. I was back taking max strength painkillers & taking a hot water bottle to bed. Also, a bucket!! Eventually I was prescribed the contraceptive pill, Marvelon, this was amazing! The first time I didn't have any pain whatsoever during my period.

But the joy was short lived & I went on to try several other different BCP's, Norimin, Microgynon 30, Femodene, Femodene ED, Brevinor, Ovranette, & Micronor , all of which helped for a short time, before my symptoms crept back & I would be rolling around the bed in agony & suffering many of my usual symptoms 2/3 weeks every month again.
I actually think that the doctors didn't know what to do for me. I was very depressed during this time & felt I was on my own. Family & friends were sympathetic but I still felt this way, they couldn't take my pain away. Eventually I was referred to have a trans vaginal scan. I was suffering a lot of left sided pain by this time & my patience was wearing very thin

Nothing showed up on the scan, so I was sent to have a Laparoscopy. I was 21.
This is when I was diagnosed with Endometriosis. This is where tissue very similar to that found lining the womb(endometrium) is outside the womb, on the womb, ovaries, tubes, peritoneum etc, although it has been found in places such as the lung & brain! It responds to hormones made by the ovary during the menstrual cycle & will grow & bleed just like the endometruim. This causes cysts called 'chocolate cysts' to form, the blood has no where to escape. This is what causes excruciating pain for most women with the condition.
They found a cyst on my left ovary too, that explained the pain I was getting there! This was removed & I had diathermy (laser) to burn away the endometriosis deposits on & around my womb. I also had a D & C. I can tell you, I felt like shit afterwards. I had a week off of work to recover

I never received any support from any professional after my diagnoses. I didn't think I was taken seriously either. My periods settled for a short while after, but as usual they gradually got more & more painful. I was prescribed Ovran, another BCP, which was high strength, again, this didn't really touch the pain so I was back taking painkillers alongside Ovran prescribed by the doctor. Co-Codamol & Co-Proxamol.

At 25, I had another Laparoscopy as my life was taken over by my periods. I still had Endometriosis. I now actually felt like the doctors believed my problems.
This time I was to start a course of injections to temporary 'shut down' my ovaries giving my body & me a well earned break! This would cause a temporary menopause with a lot of the side effects!

I had 6 Zoladex injections at 4 weekly intervals. I had no periods, no pain, but huge hot flushes! This didn't bother me in the slightest as I could do anything I wanted without the worry of my period & all the hassle that came with it!
The zoladex lasted for 9 months in total, which was bliss. When I did get my periods back again they were a lot lighter & less painful. I was put back on Marvelon BCP, as it worked quite well before. But again, they gradually started getting worse.

When I was 28 I started with a whole load of different symptoms. Migraines! I was taken off of the BCP straight away & my periods disappeared. My first thought was that I was pregnant, so I did a test, which was negative, thankfully! I went along to the doctor who did another test which again was negative. He took my blood pressure which was extremely high, & I had to go back everyday for 2 weeks until it came within normal limits & then every week after that, then every 2 weeks. It eventually calmed down. I also suffered very swollen ankles & my weight shot up by 2 stone in two months!!! I also started to have increased amounts of hair growing on my chin! UGH! My period came after 9 weeks & went on like that for quite a while. I wasn't bothered about missing them, just bothered about why they had become like this. I was sent to hospital for another scan & a blood test.

Four weeks later I was told that not only did I have PCOS(polycystic Ovarian Syndrome)but I also had Premature ovarian Failure(P.O.F or early menopause).

I was gobsmacked!

I asked if they had got it wrong, I was told, the level of hormones I had, FSH 84.3 LH 51.6, I was post menopausal, it could not be wrong. I had more blood tests & waited for the results. I was given no advice or support in the wait for my next results. All they could say was that they would never know the cause but it could be due to surgery for endo.
When I got my next results I was told that the previous results were wrong & I had PCOS, but not P.O.F. The gynae gave me no time for questions & shoved me out the door!

I was given Metformin for the PCOS which would help with hair growth and would slow it down. The doctor said he would do more blood tests for P.O.F as results from 2 tests were not enough evidence to say either way whether it was Premature Ovarian failure. I never got those tests. My periods were as awful as ever. At 29 years old I was beginning to think I would never be rid of pain.
I moved to a new area, a new doctor, who was & still is awful, but he did refer me to a Gynaecologist, & asked if I wanted to see someone different, which I did.
I had another scan beforehand to give my new gynae a picture of what was going on inside. PCOS was still there, I had cysts on both ovaries.
He was amazing!

After 17 years of documented problems, he said he would perform a hysterectomy & Bi lateral oophorectomy.

First, I was to have another course of Zoladex to shrink the Endo & also give me some proper pain relief. Also, to completely decide whether I wanted children & I was to discuss this at great length with my husband.
I had never really wanted children, I don't know whether this is because of all the problems I have or not. But, it was still an extremely hard decision which I did not take lightly, this was to change my future.

I also knew that if I did want children this would not be a straight forward conceiving for me. I would have to have several other procedures & surgery to help me conceive, with Endo & PCOS, my chances were very slim. There were no guarantee's it would happen and I didn't want to go through anymore. I wanted to live the rest of my life pain free.
I started on zoladex injections & this time had Tibolone (livial) HRT as 'add back' to control menopausal symptoms & also to get me used to taking this type of hormone.
After 2 weeks I started getting period like pains then I started bleeding heavily, with all the familiar symptoms I used to get. I went to my doctors who said that's normal for HRT. Fat lot of help he was!

So I went to see my gynae who suggested to stop taking livial for 6 weeks then start back on it again. Which I did & I felt exactly the same & started bleeding again straight away, after 9 days I felt like a zombie, I was exhausted and I wanted to collapse! I went straight back to see him again & he changed my HRT to Evorel 50 patches. These suited me fine and I had no problems apart from a little irritation from the adhesive in the patch.

I decided to go ahead with the Hysterectomy.

On 19th October 2004 my life completely changed. I'm 15 weeks post op now. It’s been a good recovery so far with plenty of ups & downs. The first few weeks are something I don't wish to think about anymore. But I'm not going to dwell on the recovery. I have the rest of my life to get on with. My HRT has been increased to a 75 patch as the hot flushes & night sweats increased & I'm doing just fine!
I found out after my hysterectomy that my womb was covered in adhesions. I was shown the pictures too, which was very interesting. I had active endometriosis & also both my fallopian tubes were blocked. I also had several 'chocolate cysts'. That explained all the pain that I suffered.
I'm 31, going through a surgical menopause, on HRT & now researching what's best for me to carry on the rest of my life healthy!

Thanks for reading!
Sophie