Severe rectal pain with endometriosis
I have read so many stories on your site, and I am still struggling so thought I would post mine and see if you can offer any advice please? I am 35 yrs old with 5 year old and 9 year old children. About 2 years ago I developed a massive unknown allergy (hives and angiodema) that lasted for 6 months. I was hospitalized with breathing problems on and off. 6 months after this, I started getting very heavy periods and severe rectal pain with periods. Normally just before I needed to empty my bowels. I cannot take estrogen due to a suspected clot issue years ago, so I was put on the progesterone pill cerazette. I bled every day, was grumpy, low and angry, so I took myself off this. The pain escalated, and I went back to the doctor desperate. I was given depo provera. I felt fine, if not a little detached and low for 3 weeks, then my life completely changed. I developed chronic depression, nausea, muscle twitching, constant heavy bleeding, uncontrollable crying, IBS, severe abdominal, rectal pain. Pain all over my body, chronic fatigue, severe anxiety, palpitations, breathlessness and the list goes on. I was incredibly ill, and had to give up my job. I had no idea this was due to the shot, and my doctor just said I was over reacting and was stressed and needed vitamins! He gave me another shot. 1 week later I was suicidal and all my side effects from before, trebled! I went to a different doctor who explained that this can sometimes happen with the depo. After about 5 months of thinking my life was over, I booked to see a obs/gyni in the uk ( I live in Bahrain.) she said she suspected endometriosis and a polyp. She did a hysteroscopy and removed the polyp, and a laparoscopy where she found deep endo on the uterosacral ligaments, uterovesical fold and sidewall. She removed what she could see and do safely and left a large amount of superficial endo. My uterus is retroverted and was stuck with adhesions. These were cut. When I woke up, I was offered all the usual treatments, danazol, lupron etc. but I refused them as I knew my side effects would come back, and that absolutely terrified me. I went to see a bioidentical hormone doctor, who put me on bio progesterone (10%) from a compounding pharmacy every day. All went well for about 3 months, then the rectal pain returned. My dose was increased, and again it settled for a while. It then came back and I was put on 160mg cream per day, always split dose. Again it returned, so I am now on 160mg cream, plus 1/4 progesterone lozenge on the pm(50mg). I have been on this for about 2 weeks, and recently didn't get a proper period, but spotted for 5 days, although the pain is persisting. Just before I open my bowels, the pain takes my breath away, and feels like something is cutting/ripping in my rectum area, behind my uterus on the left, and under my groin and inside my vagina. I am concerned that I have a big lump of endo on my rectum/nerves or somewhere close, and that the progesterone won't be enough to tackle it? Do you think the dose is too low still or do i just need to be patient? Maybe I should try a vaginal pessary of progesterone? At the moment I am nervous to go out in the morning from school drop off, incase I need the toilet. I am often late to school, as I am sitting on the toilet, breathing through the pain. I have a great healthy diet, take met 13 carbinol, Eskimo omega 3, a good female multivitamin mineral, n-acetyl, calcium, magnesium powder, hardly drink any alcohol or eat too much chocolate, eat loads of fruit and veg, no dairy etc. I feel like I am doing everything I can/ should be, but the sharp pain before the toilet is debilitating. Interestingly, in general, my periods are a lot lighter and I have practically no pain around my ovaries and back that I did pre progesterone treatment, but the bowel pain continues. I am a much nicer person than i used to be mood wise, and i am much more relaxed, but want to move on with my life and feel I can't until I have the bowel pain under control.. Any advice would be greatly received.