Good news ...but also surprising news 😲 - Endometriosis UK

Endometriosis UK

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Good news ...but also surprising news 😲

Teq123 profile image
Teq123
•7 Replies

Hi ,

Would like to share my news from today ..

A 58mm complex cyst was found 5 weeks ago on right overy .

I'm a 58yr lady with hysterectomy full one in 2004 ..due to severe endometriosis.

Just had right overy left ..

Had a mri scan for the cyst ..

Been to see the specialist for results today ..

The tumour is not cancerous..No cancer tissue found

Which is fantastic news ...sooo happy ..

But very surprised that the cyst was endometriosis..

It's taken 13yrs to grow its ugly head ...

I have been having pain but bearable ..no way did I think at 58 it would come back ..

But have been on HRT ..

NOT NOW THOU ..

Due to me having so much surgery in the past..2 sections, tv t x2 hysterectomy ECT..too high risk

Could also see old Endo deposits on scan ..on bowel n pelvic area too .,

So watch n wait now ,which to be honest I'm happy with that

Go back to have a mri scan..in 6moths to see if any changes or growth ..

So booked a holiday now week away in sunshine in September

Thankyou for listening ladies

Tilly x

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Teq123
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Christie22 profile image
Christie22

Hi Tilly , I ve just had both ovaries Fallopian tubes and cystic masses removed thankfully all clear for me now too . I am the same age as you and had been using HRT this was taken away from me so without this and ovaries crashed into menopause !!

I have endo clinic next Tuesday I am shocked too ,,,

Enjoy your holiday xxx

Teq123 profile image
Teq123• in reply toChristie22

Ã’h wow so sorry to read this ,

It's terrible isn't it Christie..you would think at our age we would be Endometriosis free .

I really hope you don't suffer with been thrown into the menopause...

It can be a terrible time ...i had zoldex and prostrap injection 6 months ..

It seems so long ago now ..at the time I wasn't using the computer so felt very alone ..but this site is fab ..jus t to write down your story ..

Good luck to you too hope all goes well at your appointment..let me no how you get on

Love n hugs

Tilly x x

Christie22 profile image
Christie22• in reply toTeq123

To be honest the relief as everything was benign was wonderful I think the issue is keeping it that way ...hope all goes well for you too I ve had many surgeries in my time too including a pregnancy in the abdomen !!!!

What it is to be a woman eh x

Teq123 profile image
Teq123• in reply toChristie22

Ooh yes 😂 my thoughts entirely..as I often say ..im coming back as a man 😜 next time .

Oh certainly...its been awful the wait ..could of kissed the specialist today ..but it's a worry thou isn't still having the endo after menopause as it could ..turn malignant..but onwards n upwards for now 😊😊 x

Christie22 profile image
Christie22

Yes I agree the wait both before surgery then waiting for results was agony ,,,it's been a difficult year my son was diagnosed with leukaemia last sept had stem cell transplant ,,,he's doing well now . Have you spoken to specialist about this issue i.e. Menopause and malignancies it's not easy to find much info on this .

Teq123 profile image
Teq123

Hi ,

I'm sorry to here the news about your son .

What a shock that must of been ..especially when it's one of your children.

So pleased he is doing well ..and he continues to do so ..

The pain n worry must of been unbearable for you ..

Big hugs ..x

No I haven't addressed that subject..about menopause and malignancy..i did have a few question with the consultant but not about that..

I do no that in post menopausal women , endometrial cancer is a higher risk than in pre menopausal...

On one of the other sites called( Overcome ) on this "health unlocked " ...is a great n inspiring site and some wonderful stories..from ladies with cancer n living with cancer ..

May be someone on there might of had endometrial cancer ..who could offer advice ..

Just a thought ..

Hope today been a good day ..

Tilly x x

caroljane80 profile image
caroljane80

Yes its the ovaries that can get endo as that's where estrogen is from the usual source of hormone ( given im assuming your postmenopausal ) but it may have been stimulated by the HRT or the dose or type ( ovaries give out a small amount or it comes via other organs i believe by some chemical change process post menopause or from the environment and what you ingest or gets into your body ). Endo can be all over the place, the hormones encourage it naturally or otherwise . I was really mad at my gynae when they thought of just removing my uterus to stop it , when my history blatentently was obvious and we'd had discussions we were trying to replicate the action of gonadatropin agonists ( which power down the ovaries . I should have run then i think lol and just stayed on the injections that i was eventually offered finally for further use ( been on them successfully for 2 years ) , but i thought Id be arguing about them with them all the time about keeping them , despite NICE guidance of 6 months. Its criminal gynes stick to this 6 months as its impossible for some people to live a normal life without becomming suicidal from pain as morphine didnt even work for me . I had add back HRT and it was ok no pain whatsoever on the injections ( implant of gonadatrophin to be exact ). I had a hystorectomy god knows if bits of ovary are splattered around as its not the same i cant take the same HRT as i could. I lost my job and life and rights everything . MY only relief is that switching to patches ( which i didnt think would work) , seems less painful than taking the pill HRT i was on which was Livial ( Tibolone a progestronic HRT synthetic ), now contradictory to what ive read im on estrogen only patches and its seeming to work. Unless Its finally coincided with an early menopause. Ive had a blood test privately my bloods post hysterectomy with ovary removal show post meno levels. Sorry to go on Im really mad at the lack of understanding even at endo centres the only near truths i got were going private even then there are sharks charging a fortune and risking pain and complications as people are desperate from adhesions even due to lap surgery you can get them. £10,000 for adhesion removal !!! seriously ?? naming no names.

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