Awaiting diagnosis

Dear All,

I am new to the forum, but I have been to see my gynaecologist today and I was wondering if anyone has the same problems as me?

My main problem is that whenever I have my period I get the most excruciating pain in my rectum when I need to open my bowels to the point I can't stand and almost faint. I have had an internal exam but no nodules felt, I'm having a laporoscopy next month. Does this sound like anyone else's experience of endometriosis? If so what was the outcome?

Many thanks in advance

Gemma x

11 Replies

  • Hi there Gemma & welcome to the forum! :)

    I have only recently been diagnosed with Endo but think I have had it for at least 10 years +.

    I went through a spell of what you are describing for a few years (probably about 8 years ago now) so possibly in the first few years that I had it.

    I'm not a wimp or over dramatic, but I imagine that is what the pain of labour feels like (I don't have any children to know!) it was a severe pain really deep inside me and it was so bad that it sort of paralysed me and made me feel very unwell. Sorry it a bit TMI! but another problem that I had was my bowels being so bad when I was on my period that at first I thought I had a bug or food poisoning, but then I realised it kept happening when I was on my period so couldn't be a coincidence.

    I have had all sorts of problems that the Endo must have been causing and no-one ever mentioned Endo or anything Gynae until I got bleeding from my back passage when I was on my period last year. I ended up being sent for a lap and by now I have Stage 4 endo that is extensive in some places.

    Since being diagnosed I feel certain that the Endo must have caused that pain, when I explained it to the Gynae he also agreed. So I just thought I would share my story with you!

    I'm not really sure about the outcome, I'm currently taking microgynon for 6 packs at a time before a break in the hope that it will calm the Endo down, as I also have Fibromyalgia and am not well enough to have the excision surgery at the moment. I think you will find that most people's cases / outcomes are very different.

    Take Care xx

  • From my mid 20s onwards I used to get a severe sharp pain in my rectum which felt as though someone was impaling me on a sword. It used to floor me and make me see stars. It would happen both during my period and at other times - not necessarily just when opening my bowels either.

    As part of my diagnosis I discovered that I had severe rectovaginal endo and bowel endo higher up- which is not to say that this will be the case with you. Whilst I am stuck with other pain and symptoms that particular pain was relieved with surgery once all of the endo and adhesions were removed from the area.

  • I would suggest before you go down the surgery route, you do something to stop your periods and see if that means that you can avoid the painful bowel issues.

    Taking birth control pill packs back to back for 3-4 months then break and have a period and then back on the pills back to back again, will reduce the number of periods to 3-4 a year instead of 13.

    Or a tablet called norethisterone which you take 3 times a day for as long as you want to hold off a period and if you miss a couple aaccidentally or deliberately it will trigger a period and these can be used to have some control about when you time your periods so you can avoid being on, when you hve exams, or training courses or holidays etc.

    These will soon tell you if what you are experiencing pain in the bowels wise is from bleeding which would normally mean either endo or a similar condition called adenomyosis.

    Plus it gives you relief from that experience and could prove a much better alternative to having surgery on the bowel.

    I do have endo in the bowel as well as outside it and have had major surgery on other parts of me with endo, so I am not ready to have the bowel op though it is something i will probably need to have at some point, for the time being I have stopped my periods completely with mirena coil which lasts for 5 years.

    There are other long term options which last for 3 years like arm implants and the smaller Skyla coil.

    These methods don't kill off or stop endo, but they do stop the cycle of pain and cramps and swelling and bloating that comes with having a period and can make life very unpleasant.

    At any event it certainly needs investigating tobe diagnosed even if you do not go throug with surgery just yet. The accredited endo centres around the UK all have endospecialist colorectal surgeons on the surgical teams and two of the types of endo that causes these bowel pains is either RV or recto-vaginal endo or sigmoid colon endo.

    Normally we recommend surgery not only to diagnose endo but also to remove all existing endo where possible. The problem is that with bowel endo this can sometimes mean having a section of your bowel removed and a colostomy bag attached while the wound heals. This is a bit of an ordeal and if you can find a way to live with the bowel issues avoiding surgery as long as possible it is the much less risky of the options available to you, which is why stopping periods can be a really useful way to cope.

    The accredited endocentres are listed on

    and you just need to check for your most conveniently located one and take the details to your GP when you are ready to ask for a referal to the to discuss your case and get some initial tests and scans done.

    They are not to check for endo as they won't always show any endo, but rather to rule out any other possible causes.

    Meantime your GP can discuss and prescribe which ever method you want to try first to stop your periods so hopefully you don't have to put up with bowel pain each month now and in the future with or without surgical intervention.

    If you consider the mirena coil - which has been a life line for me and many others, then it is best inserted during your lap op. it takes 4-6 months to settle and get to work then should stop your periods up to 5 years unless you have it removed earlier if for example you are wanting to start a family.

    I still have bowel endo problems but nothing on the scale it used to be. It is manageable and while some trips to the loo do require 10-20 minutes of recovey afterwards by sitting still, it certainly worth it in terms of avoiding another massive op and lengthy recovery.

  • Hiya :-) You say you're surgery is already planned for next month so that's good :-) It does sounds like it may be rectovaginal endo. My nodule was felt on physical exam by a top specialist when I was 5 days before my period in jan but was not able to be felt by another specialist in march when I was approx 12 days into my cycle so just because nothing was felt on exam doesn't mean that its not there!! My second consultant swore blind I didn't have Rectovaginal endo but after my op he was laughing & saying that I clearly knew what I was talking about!!! If it is rectovaginal endo then it is really important that you look to having it removed by an specialist who is experienced in dealing with advanced endo because rectovaginal poses the greatest challenge surgically but please don't let that put you off having it surgically removed - it just means you need to know you're being seen by a specialist which is no bad thing atall :-) I did a lot if research to find the specialist I was happy with. All but one of the specialists on the website are NHS and many are private aswell. It may be that the endo is on your bowel and it would be good to get this removed sooner rather than later to prevent it and your symptoms from worsening - most ladies do not need a colostomy bag - this is a truely rare senario so I wouldn't let that worry you unnecessarily at this stage & put you off having surgery to get rid of the endo if it is on your bowel. Do you know if they plan to remove any endo they find when they do your op next month? Have they mentioned whether they will be excising or burning it? With burning the endo simply regrows so its much more effective to have it excised ( cut out) instead - this is the only way to efficiently remove endo. I Hope this helps & good luck with your surgery next month :-) x

  • Thank you all for taking the time to reply to my posts although I'd never wish this on anyone it is comforting to know I'm not the only one! People (inc other woman) look at me like I'm mad when I say it's pain in my bottom! And I don't think there is much sympathy from the public - it seems like it's thought of as just a period pain and you should just get on with it??

    My consultant is very lovely and she is literally just going to look at the lap to get a definite diagnosis then come up with a plan afterwards? Luckily I have had my son and don't want anymore children so hormone treatment might be the best idea? But we will see!!

    And many thanks again for your support,



  • All the best Gemma . Keep us posted x

  • I just thought I'd add to this post because I've had those severe sharp pains up the rectum that you describe; just before and at the beginning of a period. I had these for years and had to squat until the pain went away. For years I thought I was constipated. However, after getting persistent pelvic pain, I was diagnosed with endo this year and I don't have any endo in my bowel. So just because you have this pain doesn't necessarily mean you have bowel problems. Incidentally my bowel pain has gone since stopping my periods with a merina coil. (It took 3 months and two painful periods before it worked though so persevere with it if you choose this route). My endo is entirely in the uterus area but I do have a form called adenomyosis which was described above and evidently can also cause this type of pain. It can be a scary old time trying to find out what is wrong with your body and where your endo is located so do keep coming on the site and getting support from the ladies on here if you need it. In the meantime I hope your lap goes well and the outcome is positive.

  • Just to echo the post above about bowel surgery and endo. Ending up with a colostomy is by no means a given if you have this type of surgery. Very, very few people end up with a permanent colostomy. Having been through fairly extensive bowel surgery and removal of recto-vaginal endo ( pretty much everything in my pelvis was fused), I asked a lot of questions and did a lot of reading around the subject before my surgery - though in my case not having an operation was not really an option.

    If the pain is caused by rectovaginal endo / adhesions, hormonal treatments might help to an extent - however they will not 'de-fuse' things from each other if adhesions have formed.

    Anecdotally - my endo had penetrated to the inside of my bowel. I had about 9 inches or so removed. No colostomy, temporary or permanent needed. However, it is important to seek out a good endo specialist who can work alongside an equally good bowel specialist.

    Anyway, hopefully you will not need to consider any of the above and the cause will not turn out to be anything to do with your bowel ;-) x Good luck & take care.

  • :-) good points

  • Hi Gemma,

    I'm also very new to this forum and the whole diagnosis. Having been looking for an answer to painful intercourse and periods for a few years now I was very recently pointed in the direction of this website. I think I'm a few stages behind you as I've just had a potential diagnosis from my GP and I'm now trying to get a date set for a laporoscopy to confirm it. I'm finding it difficult to deal with being sent backwards and forwards between my GP and various specialists and am currently not sure where I stand.

    In regards to your localise rectum pain I have something similar though not so extreme, it was however the thing that confirmed my GP's suspicions and made her suggest this path. Before I had held back that piece of information as I had several other symptoms, a decision that now frustrates me! If it's OK to ask do you only have the pain during your period or does it sometimes hit in between as well. I usually just have it during my period but more recently I've felt it (very, very mildly) at other times and I'm not sure if this is something I should be worried about. Anyway I wish you all the best with your op and if it's not too much trouble would be keen on hearing the outcome?

    I really hope everything goes well for you and best wishes


  • Good morning thank you for your reply, I hope that you soon get a date for your laporoscopy so that you can get some treatment started.

    I usually get the pain severly just during my period, however occasionally I do feel it at other times although like you said this is mild and doesn't stop my day to day life.

    Please keep us updated with your progress xxxx

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