Hot flashes and endo

Hey, I'm just wondering if anyone is familiar with this, and what it could mean.

I've got stage 4 deep infiltrating endo and over the past few months my symptoms have been worsening. But they were fairly typical endo symptoms for me, cramping, pain, nausea, vomiting and fatigue.

Over the past few weeks though I've started having hot flashes, like I did when I was on decapeptyl. Also my period only lasted a day and a half.

I think something is definitely up, as I can see a visible bulge over my laparotomy scar on one side. But I've never had hot flashes and sweats as a symptom before

I'm only 29, so don't think it's the menopause just yet, though I have had most of one ovary removed.

Will be sorting out a referral to a bsge centre after Crimbo, but any ideas what's going on??

9 Replies

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  • Could be hormonal or thyroid. A blood test might shed some light on the hot flushes.

  • Thanks Jean, I need to go to the GP and get some blood work done I think, I'm just avoiding it because they are about as much use as a chocolate fire guard. last time I went he told me to get pregnant, that would magically cure me. I know I'll need to be pushy and I'm not looking forward to it especially.

  • Hi Katy, I know it's not easy but you really do need to insist on a refferal to a specialist. GPs just don't know enough about endo to be able to help. As for them telling you to have a baby , what a load of rubbish. I know some women get relief from symptoms whilst pregnant but it certainly doesn't cure. I saw a post on a different site where a young girl was told to get married and that would cure her endo. It makes me so angry that these old wives tales are still used by gps. Sorry for the rant. I really hope you get some relief. I'm on Zoladex at the moment so I know how bad the hot flushes can get. You could try evening primrose oil for them , I have found it helps slightly.

  • I plan on seeing the gp and telling them I will be going to a bsge centre, then paying for initial consultation privately. Get the ball rolling and hopefully have a scan to ensure there's nothing critical that needs urgent attention,

    As for GPs rant away. I've only been to that place the once, I'd just moved to the area. I couldn't quite believe his attitude. It was one of those times where I was gobsmacked and just mutely nodded. as soon as I left I thought of everything I could actually have said to him. Far too late haha.

    Before I was living in Italy, and the awareness, attention and concern from every one of the doctors I saw was incredible. After my surgery, even the anaesthesiologist was coming by daily to check on my progress. my normal doctor actually stopped by the hospital also.

    Having said that, the actual surgery was a bit of a hatchet job haha,

  • Hi Katy, I'm 42 now but have been suffering symptoms since I was 14/15 . No gp would listen to me when I told them I knew something was wrong and tried to describe the pain. Was always to told it was just normal for me( how would they know). Then about 10years ago was diagnosed with Ibs which I also didn't believe. Met my husband six years ago and started trying for a baby 4 years ago, no success. New gp started and I went to speak to him and he's been fantastic. Sent me for ultrasound which was October 2014. This showed a 6cm endometrioma on my left ovary , saw consultant end of January then had diagnostic lap in July. It was then that I found out the endometrioma had grown to 11cm , my right ovary and tube are stuck behind uterus, and bowel is badly stuck too. I have since seen a specialist sonographer for another ultrasound to map the extent of the endo. Unfortunately it looks like it is penetrating the bowel and causing a blockage. Found out last week the date of my op is 11th March. I will be having a total hysterectomy, ovary removal, excision and possible bowel resection. Fortunately for me I was referred straight to a endo specialist from gp. Hopefully once I've recovered from op things will be better. Hope you have a better outcome this time around.

  • Hi, I have hot flushes too, and they got worse when I started taking birth control pills to treat endo, so I suppose they can be caused by hormonal imbalance. Might be endo flare up. I read somewhere endo tissue produces its own hormones - not sure if that's true, but endo might definitely mess up your hormone levels.

  • I have stage 3/4 endo and under active thyroid . I get hot flushes and dizziness alot I assume it's normal as it's our hormones out of whack.

    Not nice is it . Hope you feel better soon. Happy Christmas xxxx

  • Hi.

    I had a lap just under 2 months ago now to remove endo. I had it all over bowel, bladder ovaries, uterus etc etc too - so pretty widespread but luckily done by one of the experts on approved list.

    I get hot flushes really badly too and night sweats. Only really started this year. Blood tests show I am no where near my menopause and thyroid working okay.

    Hot flushes seem worse for me when I'm stood up? I don't necessarily feel dizzy, but sort of panicky and that I need to sit down asap.

    Coincidentally I too get very short periods. I know one of the main symptoms for endo is long and heavy periods and I did have those pre child birth but I'm now the opposite. All the other symptoms carry on for days, but sometimes I can get away with less than 10 pads!

    I've not been on the pill for 20 years or taken any other meds, coil etc. Had an internal exam during my diagnostic lap and my uterus is fine so really don't know why my periods are so light or why I get the hot flushes :-(

    if your doctor gives you any explanations or suggests ways to alleviate the hot flushes please share....

    Hx

  • My periods changed completely after I had surgery, but had evened out at 5 days. This 1.5 day one is a complete anomaly for me.

    Pre surgery my periods were messed up because the cysts had distorted my uterus to the point where it was pushed right into my left side and fluid couldn't escape easily.

    It's a bit of a worry that this escalation of symptoms might be due to another 'supercyst' (my husbands term haha, Cyril the Supercyst was my last 15cm beast), throwing everything out of whack.

    I'm feeling groggy and hormonal a lot, like my body is awash with so many hormones, I can't see straight. Which was the case the last time it was bad.

    I don't know, I'm worried, but Christmas is so stressful with our family situation at the moment, that I'm waiting till after Christmas to go to the GP. That leaves me spending any quiet moments worrying more! I feel like I'm a student again, pretending my last essay doesn't exist.

    Merry Christmas everyone!

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