Severe rectal pain with endometriosis

by Ella
(Bahrain)

Hi Wray,
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.
Many thanks
Ella

Comments for Severe rectal pain with endometriosis

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Jan 29, 2013
Severe rectal pain with endometriosis
by: Wray

Hi Ella I can't believe the trials you've been through. All drug based Contraceptives have the potential to cause harm. Surely he could have seen what the first shot had done to you, but to give you a second shot was criminal. Progestins, and to my mind provera is the worst, lower progesterone levels, and send some women into terrible, suicidal depression. Dr Dalton talks about this is her books, see here. Oestrogen would make it worse too, as that lowers progesterone, so I'm relieved you weren't offered it. And of course it exacerbates Endometriosis as it causes cells to proliferate. Hence the offer of lupron as that stops all production. I'm so pleased you finally found an ob/gyn who knew what to look for. The endo could be lodged in the rectum, it has been known to, but the pain sounds like an anal fissure, did anyone check for this? The pain can be excruciating, and radiates up through the body. But would be worse with bowel opening. In either case, you would need to apply the progesterone into the rectum, and around the anal opening. Either a syringe for the cream, or a suppository, which could hurt somewhat inserting it, can be used. But I don't think you are using enough progesterone, I normally recommend 500mg/day if there's any pain. I wouldn't bother with the lozenge, any oral progesterone is destroyed by the gut and liver, even with lozenges you'd loose a lot. There's more info on our page about Delivery systems. I'm glad it's helped your mood and to be more relaxed, it should do, but please consider using more, and using it in the rectum too. I've found if applied directly to any painful area, it works faster. It's the best thing for burns. I have been trying to see if there's a connection anywhere between the hives, heavy periods, rectal pain and endo, and the only thing I can think of is excess oestrogen. It causes us to be more sensitive to allergens, the heavy periods are obvious of course, there's more info on our page about Menstruation and so is the endo. The rectal pain is a puzzle, and could be unrelated. Unless it is the endo which is lodged there. But oestrogen is also an inflammatory hormone, plus it seems to stimulate substance P, see here.
Continued below

Jan 29, 2013
Severe rectal pain with endometriosis Part 2
by: Wray

Hi Ella This is a nociceptive neuropeptide which causes pain and nausea. Substance P inhibits progesterone, see here, but if enough is used, progesterone suppresses substance P, see here. "Accumulating evidence indicates that the neuropeptide substance P is predominantly involved in neurogenic inflammation and pain perception...... Intriguingly, decreased pain sensitivity is found to be associated with high plasma progesterone levels. We hypothesize that progesterone may attenuate nociception and associated inflammatory response." Please also have a vitamin D test done, it's also helpful for pain. But it's the most potent anti-inflammatory, levels are low in most of us, and yet it's the most important nutrient there is. It also lessens the allergic response. For more info on vitamin D levels, test kits etc see the Vitamin D Council, GrassrootsHealth and Birmingham Hospital. Blood levels should be 70-100ng/ml (175-250nmol/L) and not the 30ng/ml (75nmol/L) most labs and doctors regard as adequate. The minimum daily dose should be 5000iu's per day, although recent research indicates it should be 10,000iu's per day, see here. I also get hives and angiodema, but I know what causes it, sulphur dioxide and any of the chemical preservatives. Problem is there are in everything! I would suggest stopping the calcium, it does cause constriction of smooth muscle, which would affect the rectal spasm. Interestingly topical calcium channel blockers are used for anal fissures. Continue with the magnesium, it has the opposite affect and relaxes smooth muscle. I would avoid anything with sugar in it. Sugars raise testosterone levels. Women make more testosterone than oestrogen each month, but luckily most of it is converted to oestrogen. But the more testosterone we make, the more oestrogen we make. If bound to SHBG (sex hormone binding globulin) testosterone becomes inactive, progesterone raises levels of SHBG, see here, so preventing the rise of free testosterone and severe PMS. SHBG drops if sugars are eaten, even those found in all grains, legumes, processed milk and sweet starchy fruits and vegetables. Continued below

Jan 29, 2013
Severe rectal pain with endometriosis Part 3
by: Wray

Hi Ella Fructose, sucrose and glucose, reduce SHBG by 80, 50 and 40% respectively, see here. Thereby allowing testosterone to rise. It's best to avoid all the foods and sugars mentioned. Wine and beers contain carbs, so it's best to avoid those too. Plus alcohol affects hormone levels in women, see here and here. It decreases progesterone levels and increases androgen levels, both the total testosterone and free testosterone become higher. Testosterone is notorious at increasing visceral fat, which causes abdominal fat gain, see here and here. The lowered progesterone, higher testosterone probably accounts for the increased risk in breast cancer risk among women, see here and here. Higher testosterone is also associated with an increased risk for Insulin Resistance and heart disease, see here. Sugars and large meals also drop progesterone levels, see here. Plus insulin drops levels too, see here. This means SHBG also drops, testosterone rises, oestrogen rises and another vicious cycle begins. I'm sure by now I've given you indigestion! Take care Wray

Jan 29, 2013
Thank you
by: Ella

Hi Wray,

Wow!!! Thank you so much for taking the time to read my very long story and offer your advice. I have had Vit D tested by the Bio hormone lady in the UK and it was too low. I have been taking Vit D drops since March 2012, and my levels have nearly doubled which is great. I think it has had a massive positive effect on my mood too in general. I forgot to say that I also take 5HTP.
I will speak to a doctor here re: fissures, although I had one of those after childbirth and it feels different to the pain I have now. The pain seems to be almost higher up and deeper than the rectum. Maybe the last part of the colon before it reaches the rectum itself? It also seems to pull something deep into my left side and the left side of my back area just before I empty my bowels!
I will ask my bio lady to send me some vaginal or rectal progesterone suppositories too and add those to the cream.
I think I just worry sometimes as I am quite thin, and the progesterone can make me quite sleepy. I was never over weight, but I seem to have shrunk even more since being on progesterone. I will give the calcium a miss too. Diet wise, if we aren't supposed to eat wheat, grain, veg, sweet fruit etc. what can we eat? I do loads of juicing of dark green leafy veg, brown rice, fish, organic chicken, potatoes, vegetable coconut milk curries, but if rice is off the list I will feel starving!!!
I am going to see a good gyni here on Thursday to see if he can do a transvaginal scan to see if he can see anything on the rectum or colon. If it is adhesions rather than endo, I'm guessing surgery is calling? If its endo, but a big nodule, are these able to be shrunk by progesterone or do they just turn into nasty uncomfortable scar tissue?
Thanks so much for your time.
Ella

Jan 30, 2013
Thank you
by: Wray

Hi Ella I thought your vitamin D would be low, and pleased it's gone up. But is it as high as suggested by the specialists? It really needs to get to 70-100ng/ml or 175-250nmol/L, is it there? You should be taking at least 5000iu per day, although 10,000 would be better. Veggie juices are wonderful, so is the other stuff you eat. It's up to you! I avoid all the starchy carbs now, rarely eat fruit whereas I used to live off it. I don't miss any of it, although occasionally succumb and usually regret it! I see you don't eat meat besides chicken or fish, I do eat that now. I tried being a vegetarian, made me tired and I put on weight. I did the metabolic typing questionnaire and discovered I'm a protein type, so now follow the Paleo Diet. The link to the site is on our page about Nutrition. The area you say the pain is in does sound more like endo or adhesions. Using progesterone suppositories would help if it's endo, but you really need to up your vitamin D, and take large doses of antioxidants if it is, there's a list on the endo page. Please read the studies too, to get an idea of what causes it and what can be done about it, this is but one study here. Do let me know what they find. I'm so pleased you're asking for the suppositories, as they should get your level up high, and hopefully help the pain. Take care Wray

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