Not taking HRT why am I still having endo... - Endometriosis UK

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Not taking HRT why am I still having endo pains?

Sweetyassi profile image
10 Replies

Hi ladies,

I've had both my ovaries taken out in 2017 due to endo. I'm going through menopause but I'm not taking any HRT. I'm still getting endo pains. I know my surgeon missed some endo when he operated on me. If I don't have any hormones inside me then why am I still having endo pains? Has this happened to anyone?

Sweety.

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Sweetyassi
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10 Replies
claudia_d profile image
claudia_d

While I was researching for myself I found that menopause doesn't guarantee endo-free life... Estrogen may come from stored fat tissue as well.

Are you experiencing this even with endo friendly diet?

Sweetyassi profile image
Sweetyassi in reply to claudia_d

Hi Claudia_d,

Thank you for your reply. I am on a endo friendly diet, avoiding gluten, wheat, dairy, red meat, soya i'm also on liquid diet most days as i can't tolerate eating too much solid foods and I'm still experiencing endo pains.

Sweety.

Pureunicorn profile image
Pureunicorn

Hi, just wanted to say that I think even if you have a full hysterectomy you can still get endo as once its started growing it can regrow by its self! I think that's right by what I've been reading about it 🤔 so all in all a crap thing to have for us women 😔 hope u get the referral and like claudis_d said dont wait for the gp to call, u call them as they will probably take ages or not do it at all, ond thing I have learnt is keep going on and make yourself heard 👍😊 good luck xx

Sweetyassi profile image
Sweetyassi in reply to Pureunicorn

Hi Pureunicorn,

Thank you for your reply, I thought and was told by a specialist that once the ovaries are removed the body stops producing estrogen and any endo that has been left behind dies. So if I don't have any estrogen flowing in my body can the endo that has been left behind still grow and cause pain?

I rang my doctor this morning and was told to ring back on Tuesday morning at 8am to speak with him.

Sweety.

Pureunicorn profile image
Pureunicorn in reply to Sweetyassi

Hi, as far as I know once the endo has started growing it produces it's own hormones so can sustain its self and carry on growing, that's why they say theres no cure for endo just things that can help 😊 hope this has been of some help xx

Sweetyassi profile image
Sweetyassi in reply to Pureunicorn

Thank you so much for your reply. It does help and I know now that my feelings and intuition was right.

Sweety.

endopositive profile image
endopositive

Pain is so complicated too, at the clinic people with no limbs could still feel pain, they said my endo was the same. I was diagnosed at 43, everything removed, but it started when I was 12, a long time in pain xx I use CBT and it has really helped x

Sweetyassi profile image
Sweetyassi in reply to endopositive

Hi endopositive,

Thank you for your reply.

Yes I agree with you on that pain is complicated. I have been with pain management clinic for so many years and have tried various pain killers and non have worked on me i just have to somehow cope with the pains day to day. I know I had endo as a teenager when I was 12 years old my period pains were horrible and I used to faint a lot every month. Do you use CBT that has THC in it? I have tried CBT but it didn't help me. Where did you buy yours from if you don't mind me asking you?

Sweety.

Christin_a profile image
Christin_a

Endometriosis can produce its own hormones. Which means that unfortunately menopause doesn't necessarily mean the end of your endo journey.

Sweetyassi profile image
Sweetyassi in reply to Christin_a

Hi Christin_a,

Thank you for your reply,

So many doctors and surgeons think they were experts with dealing with endo but are not. It's us ladies who know from experience who know what is happening to our bodies and what is right and what is helping us. Because my endo has been so aggressive in the past I had a strong feeling that even going through menopause my endo will still be there causing me problems along with adhesion.

Sweety.

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