Bleeding 3 weeks out of 4 and have had endometriosis in the past, is this a sign it's come back?

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Hi everyone, I had endometriosis removed in 2015 and this cured my symptoms. I have since had a little boy and over time I've produced new symptoms (pain) in new areas and now suddenly bleeding all the time. I get sharp pains in my right hip and I'm in agony with going to the toilet (bottom)

I have a few days off and the bleeding starts again, Is this something that happens with endometriosis in anyone's experience? I've had a pelvic exam a with a gp which visually was normal and bloods all normal including full hormone testing. Im awaiting appointments for a scan but I'm so anxious. Thankyou for reading.

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  • Posted

    I am sorry to say that it could be endo again. It could be some other things. You didn't mention your age. If you're really lucky, you just need a DNC.

    Good luck.

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    • Posted

      Thankyou for your reply, sorry I'm 31 buy started having problems at 23. I had some polyps removed first and then endo at 25. What is a DNC? I also hemorrhaged after labour and wonder if this has caused my reproductive system to have more problems. Do you think endo can make you bleed all the time? Thanks for reading

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    • Posted

      Dilation and curettage, or curettment. Probably a better abbreviation is D&C. It's a scrape of the uterus done in women with heavy or near non-stop bleeding. You'd be kind of young for that, and endo is a better bet. They also use D&C as a diagnostic tool, looking for possible problems inside the uterus.

      The majority of women who hemorrhage after delivery do not have endo, so i don't know if there's a connection.

      Yes we have women on here who talk of similar problems. I had everything yanked at 27 so mine didn't get a chance to progress that far.

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    • Posted

      hi airtarg359,

      i have been following this forum from quite sometime and have noticed that you are pretty active and respond promptly to everyones queries. If you don't mind may I ask you a question . Did you have a complete hysterectomy at the age of 27 ? and are you on any pills since then ? and how has your life been after that .

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    • Posted

      I have had endo symtoms since the onset of my periods, that is from the time i turned 12. I tried everything possible but could not fall pregnant yet. I am 37 years old now and still desperate to have babies. my surgeon suggested a complete hysterectomy in future. i find it very hard to accept this. please let me know your experience with life with and without endo

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    • Posted

      Oh Mel, I am so sorry. We have women who conceive into their 40s with endo, but i don't know your fertility issues/your husbands, scarring on your organs, etc.

      I was diagnosed at 27 in '81, after 3 yrs of sheer hell. It was a gastroenterologist who knew what i had & told gyn what to do. Only 2 other people knew what it was -- a woman DXed in the '30s and a friend a few yrs older than me. i had started when i was 10 and had heavier and much more painful periods than my friends. Went on '60s, uber-strong BCP at 16 because i was sexually active.

      I didn't want kids, had known since i was 6-8 that i didn't want kids. So after my lap at 27, I fought hard to get everything -- tubes, ovaries, uterus, cervix -- removed, and had that done about 5 weeks later. Best possible decision for me. my friend did the same but she was 8 yrs old & didn't want kids, either.

      I had an adjustment with some pain, don't recall how long it lasted. But i had just had a ton of myself removed via a long bikini-cut surgery. Everything has to heal & re-adapt. A few yrs after my surgery i had a vaginal tear from plain missionary position sex. They had just come out with generic for premarin, and i had been saying it wasn't effective. i was right: my vagina had thinned down to onionskin paper, and the generic was pulled off the US market. Required full-on surgery. i nearly bled to death from what was truly crap sex with the longest and most unskilled penis on earth. No matter what, i no longer had so much pain that i would lie down on bare floors to chill the pain out of my body, never had to dash home to change clothes because my abdomen had instantly bloated me out of whatever i was wearing -- and i never wore skin-tight clothes. Never spent time in the fem products aisle, nor spent money on that stuff.. I took the highest dose of premarin into my late 40s, when docs hounded me to cut back because i smoked cigs.

      By 2008 i was down to the lowest dose of premarin, taking it 3-4 times/week. In August i started having bad diarrhea, just like in my 20s. At one point i said to EMTs in an ambulance, "ya know, if it wasn't impossible, i'd say i had endo again." Those 2 guys just looked at the 54 y.o. woman on the gurney & looked away. My docs all thought i had diverticulitis. i told the surgeon that i thought he was wrong but agreed that surgery was necessary.

      I had a small colon resection, just 6-8". And i was right, it was ESB: Endometriosis Strikes Back. Again, I have been very very lucky as i have not had either a blockage or an opening of my intestine since that surgery. Stopped taking premarin completely. Very occasionally i will have mild hot flashes. My skin is a mess. i still have some acne and pimples on my face (@ 65, i ask you!), and the skin everywhere else is as thin as that of 99y.o. women -' it went very thin right after my hysterectomy, and is now so thing that in November, the pads of my dog's feet -- no claws involved -- pushed aside a huge are of skin on the inside of my lower leg. Bad spot, took 6 wks to heal.

      So that long book is my story. i mention all of it so you know.Nowadays it's nigh impossible to get them to remove both ovaries. i believe that keeping the ovaries leads to a quicker return of endo, tho i have no proof to back me up. The truth is that your endo has had a lot of time to spread to many many locations in your body. That doesn't mean that nothing should be done, just that a surgery will take a lot longer. All surgery is a risk; the longer they go, the bigger the risk

      There are many women on here who have not had the good results i have had. Some have needed 2 bowel resections. if there's a surgery you never want to repeat, it's that one. With each passing year, tho, your chances of peeing and/or pooping in a bag increase, because the intestine and the urinary tract are so close by for the spread of spots. This disease S-U-C-L-S.

      I always answer quickly for 2 reasons. I never want anyone to feel as alone and terrified as i felt in the '70s, and because sometimes people catch my response but didn't see the OP. i can never say anything about the new meds except, f*^k, they're still no cure. If men had this disease, it would've been cured by 1970. wish i had something more cheerful to say.

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    • Posted

      OK thankyou for your knowledge, it's nice to here a fresh opinion from someone who has had it, the doctors where I live are very inexperienced and told me I had IBS for years before I diagnosed myself and told them I thought it was endo. A gynaecologist kindly did a lap after my suggestion and found it on my ligaments surrounding the womb. I'm pretty sure it's come back but I've never bled like this before so I feel it could be something else, heads all over the place. We would like a sibling for our boy so it's an emotionally crushing time. Thankyou for your reply.

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    • Posted

      Rachel and Mel, both of y'all need to keep after the docs. It seems that the vast majority of them now think that vaginal ultrasound is the final determinant. They are wrong. It's still the lap.

      Rachel, i had IBS thrown at me repeatedly, by GYNs, back in the '70s. I would look at the docs & say, Nope, I don't have that. Every doctor should know enough by this friggin century to know that endo gets on the intestine. It bleeds through into them, and they should know it gets on the urinary tract also.

      Feel free to tell those docs that a 65 y.o. woman would love to have a chat with them. If you possibly can, get to an endo specialist.

      You're both in my heart & prayers.

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    • Posted

      Thankyou so much for being so passionate about this and caring of others, we need more people like you in the world. It really does take a weight off talking to others. Sending love. Many thanks.

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