Possibly Endo - ideas?

Hi

I am new and am looking for any advice. I have been told that I may have endometriosis but I don't seem to fit all the symptoms. A laparoscopy is being done this weekend to see. Sorry this is long!

I am 35 and have a 17 year old daughter. I have never had heavy periods or any major period pains. I have spent the bulk of my time since pregnancy on the pill. I did try a coil but it was a disaster.

In July I stopped the pill (Yasmin) as I was having hot flushes and night sweats and my GP wanted to test for menopause. I had four blood tests done and the first three showed wildly fluctating oestrogen and FSH; when one was OK the other was post menopasual and vice versa. The last set done in December were normal. My GP also did a CA125 in December and that showed no problems.

In November I was struck by incredible pain in y left abdomen, burning, cramping, twisitng. After 4 days and being told period pains/ gastroenteritis I was sent to the GP unit at the hospital who told me it was a burst ovarian cyst, pain would subside and I would be called for a scan and a follow up appointment. I had the scan but no follow up and in December I had a recurrence of the pain (week after period) and collapsed so was taken to A&E. My scan showed fluid in my pelvis which concerned the initial Dr who gave me morphine for the pain and called another Dr. He sent me for an X-ray and to a ward, he was somewaht concerned about the fluid. There a third Dr said if I could produce a negative pregnancy test I could go home as they didn't know what was wrong, he really couldn't care less about anything. I got told I should chase for a consultant appointment myself. I sepnt much of November and December in pain. some days fine, others blinding pain, most days some dragging and a feeling of fullness.

I saw my GP whilst waiting to see the consultant and the discharge from December said burst ovarian cyst. I then saw the consultant at the end of December. He said he did "belly ache" not "womens issues". He could do a laparoscopy but wouldn't know what to look for so he referred me to gynae and told me to go back on the pill in case it was hormone related. In fairness although I have continued to have pain on the pill it has been far less severe.

Saw a Gynae at the start of this month and after going through everything she said she felt I am likely to have endo and the fluid in my pelvis was likely to be retrograde bleeding (ick). I was booked for an April 24th lap to have a look and possible laser endo and suck out any fluid. Then last week they called and said I could go in this weeked as there was a new list open so I grabbed the chance.

Does this really sound like endo? I always thought heavy periods were the big thing with it and mine are maybe 4 days on the pill and were less when off it. My flow was really light as well. I am a complete novice at gynae probs.

3 Replies

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  • Hi

    Endo doesnt come only with heavy periods, mine is 3-4 days and light, but I have endo. I always had period cramps just before period and with ibuprofen I was fine, so nothing abnormal at all.

    But one day, last year the constant pain started on my right pelvic area and didnt stop. Some days better, some worse (worse days from ovulation onwards, but not every month the same severe pain) until I had a lap and endo was found.

    So my point is that you dont have to fit exactly all common symptoms, some women have severe endo in all their pelvis and organs and they didnt have pain at all, they only found out e.g. when investigating for infertility etc.

    Good luck with your lap, I hope it goes well and it is something simple that can be sorted and not endo or something else serious.

    Jo xx

  • Yes it could be endo, but cysts do burst and seal up again and refill up again, I've had that happen twice. And yes the follow up scans are never made, you have to push and push your GP to badger the hospital to book you in for a follow up , especially as you are still having symptoms. the hospitals hope never to see you again as most cysts do clear up once they have burst.

    A burst cyst can deposit it's contents all over your lower organs as it is like a waster filled balloon exploding and whatever was in the cyst has to go somewhere and it can't leave the body.

    You can also have cysts with a slow painful continuous leak.

    So it could simply be that you have a demon rogue cyst in you which is leading you a merry dance, and not actually have endo at all. That would be the best scenario, and have the cyst removed entirely and make a full recovery.

    If however there are lesions of endo around the lower stomach then these do need to be removed if at all possible in lap surgery, either cutting them out or lasering them back.

    Delighted to hear you grabbed the opportunity for a diagnostic lap so soon. That's great, the quicker you get seen to the better.

    Cyst pain can be paralysing, extremely severe, and to make blokes understand what it could possibly be like, I suggest they 'imagine' someone twisting their testicles hard for several hours !! that usually gets the message across and brings tears to their eyes.

    retrograde bleeding isn't always going to give you endo, it is ick but fingers crossed it's just the cyst.

    if they do find endo, and if the surgeon advises you start on hormone therapy right after the op, say no.

    Ask them what drug they want to put you on, then come home and do your own thorough research on th drug BEFORE you start the treatment. A few days wait will make no difference at all, and it is vital that you know what to expect before undertaking hormone treatment.

    In my case I was given my first hormone implant in hosp within hours of my surgery and not even told what drug it was, never mind what it could do to me, and what it did end up doing to me. That's my no.1 word of caution after the op. Have the pain killers and morphine for the surgery pain but do not start any meds for endo till you know what it is they want you to take and you have fully read up on it. Hopefully it won't be necessary at all.

    Very Best of Luck, and remember they will pump you full of gas to have the op, and it doesn't all come out right away , so you need to wriggle and jiggle and fart and burp it out as best as you can as soon as you can. Otherwise it really hurts - more than the op holes.

    And when you come round from the op, the sooner you can get out of bed and potter along for hourly short walks to the end of the ward and back to bed again the better for healing. It will hurt, but a little exercise and often is the key to getting the gas out and helping you on the road to recovery.

  • Thank you so much for your replies. I did think a cyst was likely given the sudden nature of the pain but the gynae seemed to think that the ongoing pain and the pain when examined was more likely endo so we'll see what the lap shows.

    The pre-op nurse was a real cow and basically told me that as soon as I come round I will be encouraged to eat and sent on my way so walking will be leaving the hospital and at home which I am happier about!!! Luckily this forum and others have given me an idea of what to expect and I have all my stuff prepared to take (throat lozenges, own drink and snack, book, comfy clothes) the only thing I'm not allowed is hubby to wait with me before the operation :(. I also have peppermint drinks, a full V+ hard drive, loads of comfy pillows and blankies and lots of offers of visitors and meals when I am out!

    I have read on here about implants and Mirena and I will not be touching them with a bargepole. I have had them pushed over the years as contraception (are nurses on drug Co comission) and had to refuse them because of the possibility of spotting, irregular bleeds etc. I am not in a job where I could deal with any of this; in all honesty the stupidly irregular periods I had off the pill were hard enough to deal with nevermind the possibility of prolonged periods!

    I am very lucky that I have an almost grown daughter so my family is complete. I cannot imagine how hard it must be to deal with these symproms and have infertility as a possibility as well.

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