Endometriosis UK


I'm on day 8 after having my 2nd laparoscopy. Still bed bound as the cramps are almost constant; the pain is close to the worst period pains I've ever had, like mini contractions. Although, apart from today which has been a setback, they seem to be improving a little every day. I'm on Tramadol, together with paracetamol and ibuprofen prescribed by the hospital. These are giving me minimal pain-relief. I booked an emergency appointment with my gp two days ago as I was given a massive argument by my parents who were fed up seeing me in bed all day. My gp simply told me that cramping was to be expected after having the Mirena coil put in.

Had the coil put in during my laparoscopy as an added precaution- I'm due to start an expensive 3 month course shortly and was terrified of pains returning and having to take time off. I was shocked to read in my file just before my op, that in my first lap 18 months ago, they found an inch long lesion on my left ovary. I have complained for 3 years about having huge pain on the left side of my pelvis- my surgeon clearly forgot to notify me of his discovery...

This recent op, it turns out that apart from a spot on my bladder and another on the ceiling of my womb (these were burnt off), all the endo was present on the left behind my ovary and was cut out. I had a brilliant specialist who treated me at a specialist endo clinic at a good hospital in Edinburgh.

My gp has put me on antibiotics for 5 days "just in case" I have a urinary tract infection, as a result of being catheterised a couple of times during my 3 day stay in hospital. She wondered if this was playing a role in the level of pain I'm experiencing. I was due my period 4 days after surgery, which is when the cramps began, but I've had no heavy bleed, only constant but very light spotting. I feel very heavy and tired, and very emotional.

As for my history, I had extremely heavy and extremely painful periods as a teenager- vomiting, bowel issues, headaches, nausea and fainting were occasional and not unfamiliar side effects. At the time I was told by doctors that my mother and grandma had this so it was simply an unfortunate case of genetics. I went on the pill at 16 to help alleviate these symptoms, along with the shocking PMS I was experiencing. This helped a little but not with the pain. It was only during a horrendous episode in front of a boyfriend at the age of 21, who asked why I'd never been offered prescribed painkillers, that it occurred to me that my situation was far from ok. I was prescribed mefanemic acid, which was like a drop of heaven! If I made sure to take it in advance and regularly then the worst of the pain held off- bliss! Sadly, this didn't last. From the middle of my twenties my periods started to become erratic- sometimes heavy, sometimes barely there. But the one thing that remained constant was spotting, which I endured fairly regularly with almost no breaks, for about two years. I had a few, embarrassing experiences of bleeding during sex- again, this was over a period of a few years. There came a time where I didn't get my period for 3 months and when it came it was for about 2 days and was very light. As a consequence, the period pains pretty much went away but only to be replaced with a different kind of pain. Here was a pain that after a matter of months, was coming on daily- a throbbing here, a stabbing pain there, a sudden shooting pain that would have me scream out and bend double. This was three years ago. At the same time, my bladder began to go crazy. I've always had a very strong bladder and could go for hours without a trip to the loo. Now I began to wake up twice in the night. The feeling became desperate, like I might wet myself. On occasion, if have very little in my bladder- other times, it was full. But the feeling was always the same.

I can't recall exactly when I first heard the term 'endometriosis' but I look back and think how little of it was explained to me for a good few years of mentioning it to doctors. After MRI scans, multiple internal and external scans, physical examinations, endless urinary and STI tests, I finally persuaded an old gp that the situation needed to be looked at by a gynaecologist. This was in huge thanks to a lovely young doctor, in training to be a gp, at the Chelsea and Westminster hospital in London. She wrote down my entire history and had it sent to my old gp in Scotland when I moved back north. The Scottish GP remembered me and my history, read these notes and immediately referred me. In short, the gynaecologist I then saw was not brilliant. He diagnosed me with endo through that first laparoscopy and went on to give me HRT via injection. The first month gave no pain relief, but the second was bliss. So we tried another 6 month, stronger program. This had no effect whatsoever and I was very fed up with nasty and constant hot flushes, as well as no pain relief. A colleague of my mothers encouraged me to seek a second opinion with these specialists in Edinburgh (her husband had trained in medicine with one of them). I did, and that brings us up to now. Though I will say that that first meeting with my current specialist was incredible. She asked me to give her a brief overview of my symptoms etc, which when I did, she said "yup, no beating around the bush- that's going to be a bad case of endo and we need to find you the right treatment. Here are your options: what would you like?'

I am so relieved to have had the op done. And I can see I'm very lucky to finally meet someone to deal with my problem so confidently. The one thing I find a real struggle is the emotional effects. I see my family and friends just getting so fed up with seeing me unwell and tired. It's been such a tough 5 years (in that time I've also lost jobs as a consequence of ill health, been dumped and had to move out and lost all 3 of my grandparents) and I feel like I don't know myself anymore. I've had to move back in with my parents as I can't afford to live alone since I lost my job. This has really affected my self esteem as I'm 31. I used to have so much energy and be a very funny, confident person. Now when things are on the up, I can feel myself almost hysterical on occasions because it's been so long between moments of happiness. It feels I imagine how someone with bipolar must feel. I'm the last of my friends who's single- the others are all married or engaged. I've always longed for children and my only nephew has been kept from contact with me for 6 months because my sister (who has epilepsy and has not been the same since she was diagnosed) cut herself off from the family because she thinks we are all dysfunctional.

I apologise this is so long. It's just been a very difficult time and I've never felt quite so lonely. I have goals in the pipeline and now I've had the op I feel focused which is great. But there are still a lot of heavy days where i struggle to feel like the normal person I should be.

For anyone who read this, thank you for taking the time. I hope the details of my history provide some help, support or insight for anyone else having a tough time.

It's been so supportive reading up about other women's experiences. Thank you for sharing. X

1 Reply


How are you feeling today? Thanks for sharing your story with everyone :) i know at times it can be difficult for both you and your family who dont quite no how to support you because nothing seems to make the pain better but you are not alone you have everyone on here who understands your symptoms and what you are going through or even if you just need a rant. Its brilliant that you have a good gyne now and your are getting the treatment you need. Hope your fully recovered soon.

Annie xx


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