Would love some info (and reassurance?) about possible endo

Posted , 5 users are following.

So... over the last year and a half I've started to get odd pains. What I would call bowel pains, pains in the kidney region, a strange sharp bladder pain just in the mornings before I've urinated, and I went and got ultrasounds, bloods and all was fine. I've always had irregular bowel movements too.

I've never had heavy periods while on the pill but I've always had mild to moderate period pains (which I only just realised I shouldn't have been having at all).

Now, I've just come off the pill (at 36 years of age) after some twenty years on the pill (I was put on the pill for irregular periods at 14) with maybe a vague hope of pregnancy and those pains have got worse and seem to have been joined by other odd occurrences; I got my true period after only 4 weeks but a week before my period came I was bloated and the pain is still hanging around. I also had a temperature for a few hours and I've had that before with no idea why. I told my doc who is sending me to a gyno, but I feel so anxious and don't want to wait the two weeks.

I'm pretty worried it's endo, and a late stage because I had no real idea about it. I'd love to hear anything that might reassure or even about your experiences and whether there's any correlation between particular pain in certain areas and the various stages etc.

Thanks, sorry for the thesis...

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12 Replies

  • Posted

    Oh and nausea too - not from pain just weird nausea like three or four times in the week before and during my period.

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    • Posted

      Sorry, AJ, but we are not doctors here. It is possible for nausea to be related to both constipation and diarrhea while being unrelated to endo, tho it can also come with endo. If you've got bladder pain first thing in the morning, make sure that you empty it after every sex act of any kind, and make sure that you empty it right before you go to sleep. During the day, drink at least 6 x 8oz of water. Then see how your bladder feels.

      Everyone's endo isn't the same. A lot of women never have leg pain. Some women have zero symptoms and others have tons. Most any doctor is going to tell you to wait 6 months or a year for your body to readjust to the absence of BCP. If you get pregnant in the meantime, great.

      If things don't clear up, they're going to want every other possibility cleared before they'll do a lap. Blood tests show nothing about endo, and scans don't give definitive answers. Only a laparoscopy does.

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    • Posted

      Hi aitarg35939,

      I've already got an appointment with a gyno after my initial appointment with the GP, just looking more to understand how people are experiencing it and to understand how likely it might be for me. Of course I understand proper examination is required for an accurate result though, but two weeks until the appointment feels like a long time.

      I think it's just freaked me out that within 5 weeks off the pill my body has gone mental with all this bloating, pain, nausea that had only been hinted at before.

      I'm all over the water/ bladder/ sex biz, though I'm thinking less alcohol too.

      I guess it's just a waiting game until the appointment. Thanks.

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    • Posted

      AJ, be prepared for a much longer wait than 2 weeks because I'm pretty sure that it's going to take some time.

      I forgot to mention: our body temperatures go up for a few hours at certain times of the day and night, and some go up much more than others. Keep a log is my suggestion.

      If the nausea happens with the bloat, especially when bloat comes on instantly, be sure to tell the docs/consultants that.

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  • Posted

    Hi it doesn't sound like endo to be honest...could be anything.. endo tends to be heavy periods losing a lot of blood clots etc..back pain,pain down legs ovulation pain. excruciating pain. it could be anything ask for a scan to rule out fibroids etc. they can only tell endo by doing a laparoscopy. which they won't do unless they do other checks first.

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    • Posted

      Hi Amanda,

      Thanks for commenting, I appreciate it. I couldn't quite get my head around why I didn't seem to have heavy periods that were very painful like everyone else was saying but my doc seems so convinced... the other alternative was some sort of bowel inflammation so maybe it's more in line with that.

      I suppose I need to get it checked before I start stressing too much. Thanks again.

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    • Posted

      thats not true. it could very well be endo. i have friends that had no pain or heavy periods, just nausea (stage four endo). i know some who had regular periods and lots of pain (stage two). my only symptom was/is nausea. i just had my lap 6 days ago and was confirmed stage one endometriosis. the symptoms of endo arent set in stone which is why it takes 10 years on average to diagnose.

      i didnt have many problems until after i had my child via csection. lots of women dont really have a lot of issues until they are in their 30s and 40s. continue to push for answers!

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    • Posted

      thats not necessarily true and with that definition of endo, is the the reason why women like me werent diagnosed quickly enough. i didnt have really any of those symptoms but i was bed ridden by others (nausea, loss of appetite, weight loss, headaches) three months before my surgery i developed hip pain, ovarian aches and cramps (not while on period). endo is too vague to give general answers to.

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  • Posted

    every one is different..I had horrific heavy periods from age 14. on pill at 16. diagnosed at 22..had 13 operations all for endo..2 laparotomomies to sever stomach nerves..numerous treatments trial drugs..zolodex painkillers...I tried everything was under a top teaching gynacologist..he was fantastic.. but we couldn't sort it where i had quality of life...I couldn't conceive..and was told even of it got pregnant my insides were too much of a mess to carry a baby. I had horrific pain all the time..on my hands and knees in agony..losing blood clots size of your hand.. I can only coment on my experience and in my experience it doesn't sound like endo..but I could be wrong.. I'm not a doctor. she asked my advice..and from my experience it doesn't sound the same..but her doctor will tell her..I'm sure

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    • Posted

      Yes, but Amanda, that "everyone is different" is not what you said when you first responded to AJ. You were so adamant that i sent her a private message. I didn't want to get into a slanging match with you but i wanted her to know that you were wrong. We have women on here who have no symptoms yet learn of their endo when docs cut them open for something else. I never had "clots" or leg pain but spent plenty of time on the floor. I also had nausea, which for me came with instant bloat that made me buy a vast tent dress to have on hand, and which sometimes made me vomit. After my hysterectomy at 27, i had 27 GREAT years before it came back on my colon. Have had another 10 great years since that bowel resection. I also know this: it does NOT come back in every woman after all repro organs are removed, tho i believe that removal of all organs is key to it not returning. But you know what? That's just my opinion.

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    • Posted

      hey! may i ask what stage you were when you had a hysterectomy at 27? im 28 with only stage 1 but it would like a hysterectomy because i def think my reproductive organs are the reason for my illness. my doctor (who is a man), doesnt think so.

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    • Posted

      Hi Ren:

      They classed endo differently then, at least in the States, just mild/moderate/severe. When i had my lap in mid-Nov, gyno said it was mild-moderate. I didn't believe that because nothing "mild" has one lying on linoleum & wood floors, writhing around & trying to chill the agony out of the body. So i demanded a hysterectomy. I agreed to that line they still push -- keep one ovary tho we know we'll have to cut you open in 3-5 years to take it.

      They couldn't salvage anything, had to take all repro organs. Gyno was shocked that things had gotten so much worse in 5-6 weeks & wouldn't have believed it had she not done both the surgeries.

      Back then in the States, you could easily schedule elective surgery (how my surgery started) & know that your insurance would pay most of it, and if the surgery was deemed medically necessary after you were cut open, then insurance paid everything. The only thing that hasn't changed since then is that surgeries are still classed elective or necessary (now also we emergent).

      I don't know where you are or your financial situation. If you can pay out of pocket then you can get the surgery pretty much anywhere. If dependent on insurance or national health, not so much. BUT everyone doesn't have my good outcome. Emotionally i had known from youth that i didn't want kids (nightmare dad) so i was in a good place for that aspect. I was unprepared for my skin going papery almost overnight, and for the strength of the night sweats when the initial 30-day shot of hormones wore off. I also had a 6-month postpartum-like depression, tho the death of one of the bedrocks in my life a month after my surgery played into that. I had similar 6 month depressions after my 2 abortions (epically fertile up til 24 with epic failures of birth control, all types). I did HRT with conjugated estrogen, not the more dangerous combined. Some of my pains continued for awhile, tho not as bad, and eventually stopped. Nowadays i would go to an acupuncturist to help with that.

      Back in '81 no one here knew it could come back. I'm glad because i wasn't looking over my shoulder, mentally waiting for it.

      If i were you, i'd try an endo specialist. They might look at things different.

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