Confused and fed up

Hi everyone

Apologies in advance for the long post! This is my first on here and I haven't spoken about this in a while because my problems (mostly) subsided whilst I was on the Depo Provera injection for about 2 or 3 years - so I just got on with it.

Background: had 'menstrual' and pain issues since about 10 years old. Missed loads of school, lost jobs, relationships, was hospitalised a few times. This was at around age 18/19. At times I had to be carried from the bathroom back to my bed - or home, if I'd gone out - because I'd collapsed and couldn't move, the pain was so bad.

They just kept increasing my painkillers and handing me sick notes, then FINALLY I met an amazing GP who took me seriously, referred me to a gynae and they tried me on Prostap (GnRH inhibitor) injections, which - despite the horrendous menopause-type side effects - helped massively. They only let me have the injection for 3 months, as I was still a teenager and it can affect bone density.

They arranged for a lap, but since the Prostap improved my symptoms, they decided that this was diagnosis enough and that I definitely had endo. I was relieved to have a name to put to my problems and to be able to look for a solution, after struggling for literally half of my life. But a while after finishing the Prostap injections and being put on the pill tricyclic (three months/pill packets back-to-back, one week break), the pain returned and I couldn't leave my bed again.

They decided to give me a laparoscopy, I think I got in on a cancellation or something because it happened quite quickly. After waiting for hours because the hospital dept was so busy etc., the lap was really quick and I awoke to be told that I was fine, there was nothing wrong with me, they were putting it down as a 'mystery illness'.

Well, I broke down crying. I was relieved in a way, because the gynae's words and my over-active imagination had basically convinced me that it'd be really advanced, I'd be unable to have children, etc. I was only 19 and couldn't deal with these thoughts. But despite this relief, I felt that they were telling me I'd made it all up - and I then had to ring my work and report this back to them.

I was let go from the job I loved, my relationship broke down, etc. etc. What I didn't realise at the time was that no longer having a sexual relationship made a big difference; it had always caused me awful pain, during and afterwards; made me bleed; made my sciatic pain unbearable; my stomach bloat right up, and so on.

I moved away and at this point a new GP suggested the Depo injection to me, and it completely stopped my periods, after the first few months of erratic bleeding. I still had pain and bloating from time to time, but it was mostly under control for the whole 2-3 years I was on them. However, I stopped the injections over a year ago because I was worried about the potential long-term side effects.

Over the last few months, my cycle became more regular again and the same old problems have started, so I agreed with my doctor to go back on the pill tricyclic again. I never really got on with the pill before, but I hoped it would help this time, since it's not been as bad as it used to be... Nope. It's horrible. I definitely think the pill makes things worse.

But one thing that started before I went back on the pill is this sensation by my right ovary, like it's being squeezed and twisted. It's horrendous. I'm used to the sharp pains etc., but this is like a sharp pain mixed with a persistent, dull pain and it's just really uncomfortable all the time. It's also the same side on which my sciatic pain is bad and I have stretchmarks really bad on that side, which I've never had before. My hip clicks all the time on that side too, which I'm noticing on here that some other women experience as well.

I had sex on Saturday, some pain during and after but not unbearable - but two days later I started bleeding lightly, later on got really awful cramps, shooting pains radiating round my side to my back and then I had to make an emergency appt yesterday because I felt sick from the pain, [warning: gross-ness] I was passing massive clots and what I think was endometrial tissue, and was just really concerned.

GP did a pg test (negative), examined me, felt my stomach etc. and told me everything was fine and just to take ibuprofen and paracetamol, or OTC co codamol. Needless to say, none of it is touching the pain.

What confuses me about the laparoscopy/'un-diagnosis', firstly, was that it took place shortly after I'd been on Prostap injections - which supposedly, shrinks endo. Secondly, I've done some research and supposedly some tissue is meant to be taken as a biopsy to be inspected under a microscope, as endometrial implantations can be microscopic and impossible to see with the naked eye, but still cause horrendous pain or fertility issues.

I'm 99% sure that I have endometriosis. If it's not endo, it's gotta be something practically identical, but I can't find anything else that sounds right to me.

I'm 23 now, went back to education, am in my second year at uni - and now it's returning, I'm afraid that it's going to completely get in the way of my studies. I just have no idea what to do.

Sorry for the massive vent, but any advice or suggestions would be VERY much appreciated.

Thanks guys

Hope you're all well

Naomi xx

2 Replies

  • Hi Naomi,

    Thanks for sharing your story. It's not been easy that's for sure.

    Was the surgeon who did your lap an expert with endometriosis? Did you order your post operative reports and if any your pathology reports, I find the specialist very often downplay what was discovered at the time of lap but these reports are much more explanatory.

    You are probably too young to be considered for having adenomyosis. You still have an opportunity for children in the future. be So you wouldn't want to jeopardize that by having a hysterectomy.

    You've been through an awful lot for being so young, I reallly wish more experts contributed to finding a cure for this perplexity. It could also be pelvic congestion syndrome and maybe this surgeon you had didn't recognize that.

    I'm sorry they haven't done more for you, but it's good that your posting on here. Hopefully the members can direct you to the answers you need.

    Keep fighting the fight, you are not alone.Hugs.

  • Wow u really our having a rough time of things. It really does sound like endo to me. I wonder was the guiney that did your laparoscopy had expertise in endo? Yes the injections would shrink it back but they should still find some. I know when I had mine they never checked my pouch of Douglas etc. Hope u find the answers u need x

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