Can anyone shed some light on whats going on? Sorry if TMI!

Hi everyone, Im hoping someone may be able to help me, this might be a bit long but I hope you will bear with me. Im 25 years old and have a history of bowel problems and severe period pains with heavy bleeding. I have a 3 year old daughter who was born via emergency c section in 2010. Since having my daughter both bowel and gynae problems have become worse. This time last year I was referred to a specialist with suspected endo, she sent me for a round of blood tests and scans and after the results came back normal, I was referred to have a laparoscopy on 17th Oct 2013 great! However I found out I was pregnant on 1st Oct I had to cancel my lap but unfortunatly it wasnt meant to be and I miscarried a week after it was due to take place, I was told I had very low levels of progesterone.The symptoms that I had had previous to the pregnancy were severe and persistant lower right quadrent pain and periods which lasted 10 days which had roughly 3 weeks breaks in between. I suffered with pain on opening bowels and during and after intercourse. Since having the operation on October 27th things have become so much worse, initially after the physical pain from having the ercp things did die down and wasnt so painful till roughly the end of December. Around 17th January I got a coldsore followed the next day by a 10 very heavy period, accompanied by the normal pain on the right, lower back ache and pain radiating down both legs. I also suffered a flare up of my bowel problems, which generally occur in the middle of the night starting right above my belly button then also moving to the right, but its very different to the gynae pain its so intense it causes me to black out, I turn white with severe sweating and I become completely unable to pass any gas :-s. The Dr booked me an abdo/pelvic scan to be done on the 20th feb to see what was going on with my stomach. On the 6th feb I started another period it only lasted 4 days however it was just lots of large plum size clots which would pass every 15mins or so. I guessed it could have been something to do with miscarriage but thought it was strange that it was fresh blood and I've had approx 3 'normal' periods prior. The scan was done and I wasnt told the results (I think he was having a very bad day) other than my womb was fine. On the 23rd another coldsore appeared and so did the heavy clotty bleeding again, after speaking to the Dr last monday I was told that the sonographer was querying pcos as my right ovary is covered with large cysts, however the extreme blood loss doesnt sit with that and she thinks its probably endo. Also she thinks my gall bladder is also abnormal in one way or another. She says I need another scan as the (not so happy) sonographer didnt carry out the full abdo scan just the pelvic one. I also have to continue with norithisterone and transexamic acid until i see my new gynae specialist on the 19th, (the last one left so I have to start all over again lol). Im just a little fed up and wondering if anyone understands any of what I have said, or if anyone may have any information or similar stories it would be great to hear from you. I apologise if its TMI and its so long winded, if only you could upload medical history like a cv to every post you write it would make life alot easier, haha. Also it may be related somehow I also had a bowel perforation in June 2008. My body is so strange! Thanks for reading, Ashley xx

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  • Dear Ashley,

    I have just come across your message and noticed that you have not had any reply to your post and although it has been a long time since you posted this message, I thought I would write to you. I wonder if you might be interested in some information that Endometriosis UK can offer you.

    You mention that your specialist suspected endometriosis but since there is no definitive diagnosis, I am sending you some useful links on the subject in general:

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    You also speak of bowel related issues and these information packs may be of help:-

    endometriosis-uk.org/sites/...

    bladderandbowelfoundation.org/

    Ahead of a consultation with your gynaecologist, you may find it helpful to complete the following forms and bring them along with you. They are quite comprehensive forms that may help explain your symptoms when trying to move things forward with your specialist:-

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    As far as pain management is concerned you may find the following of use. (see page 8 onwards for pain relief options). I have also added a few other external links that include complementary therapies:-

    endometriosis-uk.org/sites/...

    britishpainsociety.org/

    cnhc.org.uk/

    acupuncture.org.uk/

    Finally, Endometriosis UK offer support options that may suit. They are run by trained volunteers that have been touched by endometriosis themselves. They include face-to-face support groups usually run once a month and are countrywide:-

    endometriosis-uk.org/find-l...

    Online support groups are available for those people who are unable to find a support group in their area or who prefer not to attend a face-to-face meeting. They do not use webcams to maintain anonymity. Again, they are usually run monthly, with the next one being on 2nd March 2015 at 8:00pm. There is a guest speaker, Hannah Short, GP and endometriosis patient. If you are interested, you have to sign up via support@endometriosis-uk.org:-

    endometriosis-uk.org/online...

    Furthermore, there is a freephone helpline where you can speak in complete confidence:-

    0808 808 2227

    I hope this helps and I wish you well.

    Take care,

    Simonetta, Endometriosis UK