Do i/don't i? endometriosis - going insane!!! help!!

Hi, im going to try to keep this as short as possible. I have not slept properly and cant stop thinking and googling and i just need somebody to speak to.

I have had problems for a number of years, constant UTI's, IBS pains, various scans of my bladder kiddeys etc. I have always thought there is something wrong with my bladder or bowels but I now am 99% sure its endo. I had two trips to A&E in the last 3months with crippling sharp pelvic pain and was sent away to the GUM clinic who treated me for Pelvic inflammatory disease 'as a precaution' and I was tested for all infections (which came up clear). they suspected PID because did an internal exam where the doctor feels my cervix, i was tender in places. I told the GUM clinic that i was worried it may be cysts but they said they couldnt refer me to the gynea without me going to my gp. The pains did subside slightly, but they have now come back again. As i moved home in May i didnt get myself registered with a gp until last month and when i finally went a few weeks ago they refered me straight to the gynae. I had my appointment last week and she felt my cervix and surrounding areas again and asked where i felt pain. she said that i felt the pain 'behind' the uterus and 'on the ligament'. She has refered me for an ultrasound and a lap. She says all symptoms are pointing to it being endo. she is also sending me a coloscopy as i sometimes bleed after sex which she said is a seperate issue. my current symptoms are:

random brown discharge

pelvic pain in the middle and lower right side lasting for several days at time in waves of pain where i become doubled over


bladder pain (especially when i need the loo it almost feels ice cold)

pain during sex

blood on a tissue after sex

pain on internal pelvic examination

now the part that confuses me is during my obsession with googling endo i have found that one of the possible treatments for endo is to have the mirena coil fitted. I have this already? should i still be experiencing pain? i have the mirena because i have very painful and heavy periods and this was to stop them.

I am particularly worried because i was planning to start trying for a baby within the next year. I am 26, in a stable long term relationship, good career and recently bought my own home. Next on the agenda was having baby - now im worried! even more worrying is that before i had the mirena fitted a year ago i wasnt really on contraception, and wasnt exactly careful with condoms/timimgs - and i have never been pregnant.

another question i have is - following the lap, how long will i need to take off work? i am a teacher and teach 5 year olds so obviously need lots of energy!

so to conclude i have convinced myself im covered in endometriosis and infertile.

thanks so much for reading and i hope this wasnt too long!


18 Replies

  • Hi Hanali,

    First may I just comment that you must be a good teacher judging by your lack of spellings errors and correct grammar.

    Next, try not to worry needlessly, as only the lap can truly reveal your situation. It is not uncommon to have all of this issues with minimal amounts of endometriosis. The amount of pain and the extent of the disease do not correlate.

    Also, the lack of menstruation whether it be by using the coil or pregnancy or hysterectomy, although typically keeps endometriosis at bay, is not a failsafe.

    Try not to speculate until you get definitive answers. Many women myself included, have carried out normal full term pregnancies despite endometriosis, ovarian cysts, HPV (very common) or adenomyosis. I have had them all and had two healthy children by natural means.

    Try to stay positive, stress free and try to eliminate bad contributors in your lifestyle. Look to the endometriosis resolved diet for tips.

  • Sorry my spelling and grammar wasn't good. It was late and I was using my phone to write the message in bed. I'll remove the post if it is really that bad

  • Thanks for replying anyway and I will have a look at the diet. I am a good teacher by the way. It isn't always about how well I can spell.

  • I think you misunderstood me hanali, I meant it sincerely (lack of errors)!

  • Really? I read this at 7am and was half asleep so I probably took it the wrong way. Plus I did notice there was a few mistakes and grammatical errors in my original post

  • LOL, You should see some of the posts I've tried to read! Sometimes I think I'm just getting to old to understand all the abbrieviations!

    Take care! x

  • Hi Hanali

    Did you have all these problems before the Mirena coil? It doesn't suite everybody. I had to have it removed and get on better with Oral contraceptives. I know it is hard not to keep looking at Google I do it too, but the best thing you can do is keep pushing for a diagnoses and new treatment which is what it sounds like you are doing. If you are diagnosed with Endo ask for some counciling. It is really important not to let a disease define you. I have Adenomyosis too and this causes low back pain and bowel problems so until you get diagnosed all the Google searching in the world won't help you. It adds to your stress and stress will increase your pain. Try and relax with some breathing exercises and Yoga if you can until you have the help you need. I know it is hard, I used to get so frozen in fear with is all this stuff, but if you can push through it and focus in the things you can do to help yourself you will feel so much better. For me I have found Yoga, Sophrology and Reiki invaluable. Google those and keep strong.

    Big hugs to you. Xx

  • Thanks so much your right I need to stop googling and try to push it to the back of my mind. My lap appointment may be a few months away so I will just try to relax for now. Iv definately done my life's worth of googling! X

  • I had symptoms very very similar to yours and I had my lap just last friday. I did indeed have endo but I also had a condition, my consultant didn't tell me what it was called and I was still in my drug fuzz and forgot to ask, when my ovaries would cause me pain when I ovulate. I had a comparatively tiny patch of endo but by ovaries were screwing me over. Lack of sufficient hormones can affect bladder and bowels and he said the answer was to go on the pill. I asked if the coil would be any good but he said that wasn't effective for the pain I was feeling and that the pill would really help me out as it would stop me ovulating. I know this doesn't help if you want children but it is easier to stop when you want to try for kids. He suggested Yasmin, so that is what I will be starting very shortly. I hope this helps you as I know the pain you are in and I know how frustrating the health system is when you are in pain, you are on the right track though and the lap will be an eye-opener.


  • Thank you so much for replying that has helped me, I just want the lap appointment to come through so I can get some answers x

  • Oh, and I'm taking two weeks off for my lap and I'm a carer. No heavy lifting for 6 weeks though as you don't want to herniate. xx

  • I wouldn't worry about your spelling it seems that you are trying to think about more important things than that! So don't take your post down!

  • Hi there

    I think that lady was complimenting you about being a good teacher! Not saying you weren't. She said 'lack of spelling mistakes' and she meant you used good grammar. That's how I read it anyway! :)

    Sorry to hear of yr troubles. It does sound like Endo. It is a horrible thing but can be treated with laps. Check with yr gyne or surgeon but I think they say after a lap you have better chances to conceive! So after healing get trying. Endo can affect fertility yes, but you are young still, so you should have a good egg count still and as long as your tubes aren't blocked and your ovaries are still ok there is no reason why you can't conceive naturally. I had a friend who had 6 laps but managed to conceive naturally at 39. And I think others on here have posted they have fallen pregnant despite having endo. It's good that it's being diagnosed now and they can hopefully clear a lot of it away during yr lap. Sadly a lot of ladies. including me, do have to have IVf because their ovaries/tubes/womb has been affected. BUT don't lose hope yet! After yr lap you hopefully will fall naturally

    I had nearly 2 weeks off after my first lap but they only poked around and took loads of pictures for the endom specialist! All depends how long the lap is too. My second one was 5 hours with a bowel surgeon present, so I was very sore afterwards and had to have 5 weeks off in the end. But the norm is about 1 -3 weeks. You do really need to totally rest up in the first recovery week. Do nothing, but potter to keep yr circulation going. It's hard with yr job too as you say.... you need a lot of energy. You'll feel constipated after the lap too so try and eat healthily and drink lots of water

    Good luck with it all and take care. Xx

  • Thanks for replying! Everything is pointing to it being endo, I sort of feel relieved in a way that I finally have answers. Iv had symptoms for a few years now but been passed around Doctor to doctor and now it is all making sense. They are also putting dye through my tubes to check they are working properly but the doctor said that this can change within 6months.

    Hopefully get some definitive answers soon xx

  • Hi i am having a lot of your symptoms too, its the pelvic pain that is getting to me as i have it on both sides everyday and i am starting to think this is what i have too, i have had IBS for nearly 40 years but the pain i have from this is totally different. Anyhow on waiting list to have an ultra-sound done, so hoping it wont be too long.

  • I'm having an ultrasound too but the doctor told me that the endo won't show up on that that's why I need the lap? So if nothing comes up on your ultrasound request a lap then they can have a good look around xx

  • yeah i will thanks, something has to be causing this pain. finding out what it is seems to be the prob.

  • Just had my pre op through and the appointment is for Monday. Does anybody know when my op might be, how long is the usual waiting time after the pre op? X

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