? Endometriosis

I am 28 and in November 2015 I came off the pill since then I have been in agony and been off work.2 months later after going to the doctors every week,I finally had a referral to a gynaecologist.She was useless!. At first she said I had a choice of surgery or going back on the pill to see if the pain goes away. The next thing I know it's the end of the appointment after she briefly examined me,says she thinks it could be endometriosis and wants me to go back on pill for 3 months and to come back.I came away feeling confused and deflated and felt like she didn't care.I don't want to have to keep waiting to know if I have it and to what extent,I just don't know what to do I really want a baby,I waited 10 years for my husband to finally propose and as soon as we try for a baby this happens! how long did everyone have to wait for their laparoscopy and diagnosis? Thanks x

9 Replies

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  • I had my lap after seeing consultant for about 3 months but had had symptoms for 6 months altogether.

    If I was you I would explain that you are off pill to try and fall pregnant and say you aren't willing to go back on it. They will have to give you the option of surgery, but be aware that recovery does take a while and it's surgery so there are risks associated.

    I'm 23 and was given same option to stay pill and see if symptoms resolved I said no as the not knowing was horrible and as I was already on the pill and in pain I didn't think it would help.

    No surgeon will ever advocate for surgery as they aren't allowed to they can only tell you facts and then it's your decision. If you aren't happy with consultant you can also ask to see someone else.

    Whatever you decide they should do its your decision! But just don't jump to surgery unless you feel you have to.

    Hope this helps and good luck with everything!

  • Thank you,you're right it is the not knowing and I would rather know now than wait months and then Find out.If there was another way to diagnose it then I would opt for that first but there isn't any other way so I feel that surgery is the only way I can begin to manage my life and endometriosis,my work need to know as well as I've been off for a few weeks now,and 3 months is a long time to then get refered on for a lap which could be another 6 months! Thank you for your reply :-) x

  • Hi - this is the protocol for suspected endo:

    cks.nice.org.uk/endometrios...

    If you are trying to conceive they have to do a lap as clearly contraceptives are inappropriate. She sounds pretty hopeless and you wouldn't want her to do a lap anyway as your future depends on the diagnosis and treatment being right from the start. If you are in England I would get a referral to a specialist centre - click my name and have a look at my post on how to find one.

  • Thank you x

  • I'm in very similar circumstances... I came off the pill TTC, the pain was horrendous - passing out at work, having time off... I soon realised the worst pain coincided with ovulation (with goes against TTC - how can I have a baby when it hurts too much to try to put one in there?!).

    I put up with this for a couple of months, paid to see a gynae privately who recommended that I do ovulation tests to see if I was at least ovulating (I was); I also charted the pain and painkillers I was taking. There is an irrefutable link between the hormones and the pain. But the pain became worse and for longer duration, my periods got worse too... I had to make a hard choice of continuing TTC and being in agony, not knowing what was causing the pain, or going back on the pill.

    So I'm back on the pill - until I get answers, I couldn't risk being pregnant and discovering that actually, it's something else that needs looking at/treatment that may risk baby or cause 9 months of pain becasue it's something else and I can't take decent pain relievers. If it is gynae related, I also couldn't risk having the pain come back after baby is born, being unable to look after baby because I'm doubled over in pain, or unable to breastfeed because I'm on strong painkillers...

    My gynae, knowing that we want a baby did do a dye test to see if the Fallopian tubes are blocked or not (but then he also 'helpfully' suggested we tried the turkey baster method if it was too painful to have sex - stupid man!)

    I'll be honest - it is a shitty choice to have to make. It broke my heart a bit, to feel as though I'm giving up on baby, wondering if I'm being selfish but then also wondering what kind of mum could I be if I couldn't even pick baby up because of the pain - who knows if I'd even be in pain by then? It's partly why I'm so upset that the lap last week didnt show anything conclusive (well, a cyst that they're insisting isn't responsible for the pain - am I sure it's not my bowel?). So I'm no further to an answer and no closer to having a baby. I'm gutted.

    And to be honest, being back on the combined pill isn't that much better... It's as though being off it for three cycles has somehow 'fed' the beast causing the pain, that the pill isn't masking it as much anymore (although I had mid cycle pains even when originally on the pill, albeit quite manageable, thought it was because I was running packs of pills together to avoid painful periods)

    Maybe you could consider going back on the pill just until they do a lap... have they even mentioned any other methods, such as MRI? Or maybe do a month recording all your symptoms and doing ovulation tests (I used the digital one that monitors estrogen and LH).

    Hope you get answers soon x

  • Hi,Thank you for your comment,wow you have been through the mill with it! hope you get it all sorted.No the lady was useless, literally said its the pill or surgery.Ive started the pill up again to see how I go but I am going to ask to be put on the waiting list,I would rather have to cancel the surgery if we find it isn't a Gynae problem than wait 6 or more months like my friend did to have a lap! I want to be healthy to have a baby,the other suggestion she said was I could try and get pregnant as it will ease once pregnant,but she didn't seem to understand that I have been off work, and literally struggle with every day chores cause of the pain.She really did not listen or understand at all.Hope it all gets sorted for you and thank you for replying :-) xx

  • I am day 5 of being back on the pill and still in pain,I hope the pill starts working again soon :-( has anyone had a biopsy or MRI to help diagnose their endo before having a laproscopy? thanks

  • My story is so similar to yours Katy! Back in September this all started just out blue when I came on period finally having not had one for a few months again (my periods have always been irregular). The pain has got so bad sometimes I can't move or I collapse to the floor.. I saw my doc literally that same day and we done tests and swabs which all came back normal. Was put on lots of different meds until finally got put on something stronger which helps take edge off but doesn't actually fully get rid believe it or not. Dr suspected endo based on me having all symptoms. Was referred for scan before that which ended up being delayed so slowed down process and they found a hemmorhagic cyst which was "nothing to worry about" and said they'd rescan in 6 weeks!! My dr at time wasn't happy so referred me to gynaecologist requesting laparoscopy which ended up taking a month to get appointment which was supposed to be 2 weeks! This gynaecologist I had was so unhelpful and chilled about it all. I've had trouble with pills in past and I told her and she didn't once think to ask which ones and nearly put me on one I'm allergic to. She said because I'm young (23) she didn't want to dive into op without trying pill and said they like to give it 6 months so to give it that time and to make appointment ready for 6 months time. I was thinking is this a joke. She even saw how much unbearable pain I was in crying when she checked my cervix!! So my dr done a compromise to give it a cycle or two and if not working then laparoscopy. I've now got a new doctor who's even better it seems but still agreed the compromise with my last dr. I've been on pill for 2 1/2 weeks and I'm feeling worse again like I was at first so rang dr and she said I think if you can try and give it another 4 weeks so six weeks in total at least then that would be good if you can. So 5 days later still the same in fact a bit worse and I just don't know how much longer I can go on.. It could be total coincidence and not pill but it's been 5 months housebound basically and have a 3 yr old..

  • Finally been diagnosed 😊

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