Need help please with diagnosis, no-one seems to know whats wrong with me!!

Hi everyone, this is very long winded but I am desperate so please read and tell me what you think.

I have had problems with periods for around 13 years and bowel probs. Had bowel checked at the time & all OK.

Saw gynae after passing a huge clot, told could be endo, decided to see what happens and managed to get pregnant.Lucky to have beautiful little girl.

Then had worsening monthly pain and really bad right sided pain along with pain in front of thigh (like being in labour, doc thought caused by back so given ibuprofen, tramadol and co codamol) went off after 3 days but still left with some pain and back pain on and off. Went on pill.

Had 1st lap,removed a twisted dermoid cyst on right ovary 2 years ago, the ovary was left in place. Also had very bad adhesions, womb stuck to bowel, in surgery for 2.5 hours! Told dont have endo.

Recovered from that but still had pain on right side and down thigh.Asked for second opinion.

Had 2nd lap 1 year ago. Removed adhesions, cleared tubes etc.

Still have same pain. Gynae said i PROBABLY have endo but he doesnt think that is causing my pain and I am a mystery!! (thats a big help). Then talked about pain management.

I was desperate, went for private MRI which showed another dermoid on same ovary which is stuck to bowel. Also said some "signal changes" that would suggest likely endo. On list to have 3rd lap to remove cyst and right ovary.

This has now been 3 years in total, cant work, cant get pregnant cos taking tramadol daily (have been since last op in June 2011). No-one seems to know whats causing my pain!!!

When endo becomes advanced with dense adhesions is it possible it's there deep inside and he cant see it? I have read this may be possible, the adhesions must have been caused by something!

I have all symptoms of endo, even down to feeling cold all the time, low immune system. I just had 6 months on prostap with hrt, stopped monthly pains, pmt etc but not this other pain that never goes away.

Have also had physio, seen chiropractor, had nerve tests,all private with no income, running out of things to try - the pain cant be anything else. Have tried amatriptaline in case nerve pain - didnt help.Could the pain be down to adhesions?

Any ideas anyone, please help!!! Cant take much more and considering hysterectomy, 39 now, but would like another child, running out of time.

Sorry its a long post but it's been going on for a long time!!

Thanks x

8 Replies

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  • Hello

    Wow, you certainly are going through it :(

    I obviously can't give you a diagnosis BUT...when I was diagnosed with endo, it was because a cyst had twisted on its stalk and ruptured. Prior to that, I hadn't really had any significant endo symptoms - I'd always had really bad period pain but nothing compared to what I have experienced since.

    The thing was - the cyst was the size of a melon. That had been inside me, and not caused any symptoms at all until it twisted.

    On the other hand, a microscopic spot of endo on or near a nerve ending can be absolutely sick-makingly excrutiating. So yes, it is quite possible that you have a tiny spot hiding somewhere that they haven't seen yet when they've been in there

    I'd also be interested to know what's causing your adhesions. It is quite possible that the adhesions are causing the pain, but what's caused the adhesions in the first place?

    My endo has bound all of my organs together, and I recognise that thigh pain. I totally get why you are going towards and endo diagnosis. Will your NHS doctors look at your private MRI scan?

    C xxx

    PS - if it IS endo, a hysterectomy will probably not cure it, especially at your age. If you want more children, don't even go there unless they can give you a very good reason for it

  • Thanks for the reply, I am at the end of my tether really.Sitting here now having stopped prostap and hrt with cramps waiting to come on, ouch!

    I think the episodes of excruciating pain must have been when the cyst twisted, wish I would have gone to A&E.

    I thought the same with the adhesions, they must be there for a reason. When I went for the last appointment my gynae was away so saw a registrar who frankly couldnt answer my questions and said "ooh these scans can make it look like things are joined together when they arent, we will see when we have a look" and didnt look at the disc.

    When gynae suggested hysterectomy I said no in case I had it done and the pain was still there, wanted a proper disagnosis first, just feel like I am going round in circles. You wait months for appointments just for them to say I don't know or they arent even there.

    I do appreciate the reply. The thigh pain/ pain above the knee is awful and the weird thing was a few hours after the last lap it was excruciating and has never gone away since, is better than it was though. Despite this the gynae is adament its caused by my back and not related to anything gynae! (also had back mri which was clear) aaaarrrrgggghhhh !!!!!

  • How was the thigh pain when you were on the Prostap? x

  • Hi, thanks for the reply. the thigh pain was exactly the same one the prostap, as was groin pain. the period pains (abdominal cramps, leg cramps, sore boobs, emotional ups and downs, headaches, picking up any bug going and it lasting forever instead of a few days, being cold all the time)did go though. I didn't have a single cold all winter!!

  • hey eggcustard, dont apologise for the long post - we are all in the same boat and we are all there for each other :)

    the leg pains are a nightmare eh? when i get shooting pains from my groin to my knee i know im in for a bad episode :( luckily for me i havent had this in a while (touch wood! lol) ive had 6 laps so far and am likely to have another, these incisions cause adhesions (scar tissue basically) but endo, in my experience causes adhesions too. at the mo im fighting to have my right ovary removed but the gynae is refusing on the grounds of me being 31 and no kids, it seems i can get preg but dont do so well carrying as i always miscarry but i start fertility treatment fairly soon so im hopeful. i want the right ovary removed as the endo always grows back behind it - if the ovary wasnt there, maybe the pain wouldnt be so bad???

    i wouldnt go for a hysterectomy - endo can affect other organs so may not be a solution. defo fight your case on this, im no expert but sounds to me you def have endo, your symptoms describe it all.

    hope your well and keep me posted xx

  • thanks for the reply, I am hoping that the cyst coming out may make some difference. it's amazing how many others have similar problems x

  • Maybe a second opinion from another gynaecologist at a big hospital with a gynaecologist who has a special interest in endo would be a good idea.

    Check out the BSGE website where there is a list of these hospitals.

    Hope this helps

  • Hi, I think there is an endo expert at my hosp but I have already had my second opinion so not sure what to do next. I haven't heard of the base website though so will take a look , thanks.

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