endo returns after hysterectomy 6 months ago - Endometriosis UK

Endometriosis UK
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endo returns after hysterectomy 6 months ago

Ryanamber
Ryanamber

hey just wondering if anyone has had a hysterectomy and endo return..I had a scan 5 days ago and I have 4cm endometrial cyst on my right overy..I had a hysterectomy 6months for endometriosis which was attached to my bowel..any ideas on what happens now 🙄x

22 Replies
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It's so horrible when you put all your hopes on a big major op and it doesn't cure the pain. I am 2 years post hyst and pain has continued so now they are suggesting removing ovaries as left them in but I am not do sure what to do

Dr basically said once it's in u there isn't anything we can do to stop it. So depressing living with this..Good luck.x

Ryanamber
Ryanamber
in reply to EndoJaz

bless you..I've been trying to keep a sense of humour about it..my little endometriosis seems to grow at a rapid pace..it's the nausea that's getting to me the most this time..good luck to you also x

EndoJaz
EndoJaz
in reply to Ryanamber

Do you still have your ovaries?

Ryanamber
Ryanamber
in reply to EndoJaz

I had everything removed but they left both ovaries..removing endo from right overy less than 6months and now have 4cm endometrial cyst on right overy and 1cm on left one...now I'm wondering if it's growing independently is it still on my bowel...weird but not so weird is my 14 year old daughters periods tuned into my period pre op..I know without her saying her periods started because that's when my overy pain starts..it's most odd..now I wonder should my consultant have removed them for it to be back so quick..have you been to see your consultant?x

EndoJaz
EndoJaz
in reply to Ryanamber

I have read on here tho that it doesnt help having them removed so I am unsure, seeing specialist in Aug unless I can get a cancellation appt before then to discuss whats next, think I may ask for a diagnostic lap if my March Mri hasnt shown anything....still waiting for results. A new symptom is when full bladder have so much pain on right that carries on when peeing and sometime after..agony. How old are you as I was 41 and they said too young to remove ovaries so left them. Big sigh xx

Ryanamber
Ryanamber
in reply to EndoJaz

yes they conserved my ovaries as I'm too young..I've just turned 42..hopefully your get your mri results soon and will have my fingers crossed for you..Im sorry your getting that pain I've also had that but that seem have gone when bladder full etc..I have another symptom heavy sore breasts ..part of me is hoping early menopause like my grandmother but that's not a cure for this horrid thing..x

Oh bless your heart... I’m 6 years post hysterectomy and I’m worse now than I was before :-( with zero action plan for the future. I’ve had 3 second opinions and there’s nothing they can do for me now. Just living with my b£&#h of a friend endo!

Ryanamber
Ryanamber
in reply to Kforkat

bless you..god where do you live my consultant wouldn't leave it at that..are you on any hormone treatment?x

I feel you, I’m back with worse pain since my hysterectomy 9 months ago, also left my ovaries in due to age, my right ovary feels like it’s playing the bongos 24-7 and I struggle to get out of bed. The endo feeds off your ovaries, plus if it’s elsewhere in your body that they haven’t found on scans, we might have to suffer pain til we’ve gone through the menopause 😬 I’m booked in to see my surgeon again tmw, hopefully I’ll get some clear options as to what to do for the best, or at least help me decide!! At the moment I think the options are...out with the ovaries or hormone drugs like HRT or the pill, It’s so hard to make such a decision, either way, it’s still not a cure! I don’t fancy going through surgical menopause and I don’t like having constant pain, both options mean talking some kind of painkillers or HRT... it’s so hard! Sorry to hear you’re suffering too, I’ll keep you posted to what he suggests, tho it might not be the right thing for any off us knowing everyone’s different 😕 big hug x

Ryanamber
Ryanamber
in reply to bighug

bless you hope you got on ok today..hard as it is I try to keep a sense of humour otherwise I think I'd cry..I am lucky that my consultant is an endo specialist...I donated my womb cervix falliopion tube to Oxford university trust..to search endometriosis..in the hope one day others don't suffer..let me know how you got on 🙂x

Hi. I had a hysterectomy about 18 months ago leaving my ovaries as I was 42. I had a cyst on one ovary before the op which was removed, but it grew back within 3 months. Consultant intially wanted to go back in and remove the ovary but as I'd just had 2 surgeries that year I suggested trying the pill. I was put on the combined pill for 6 months which worked well for stopping the pain, however at my next appointment the consultant switched me to the mini pill (because of my age - what every woman wants to hear). Didn't get on quite so well with that one as I put on a ton of weight so stopped taking it 4 months ago and been coping with the pain since then. Unless I want to try drugs inducing menopause, which I don't, my consultant is adamant that the ovary being removed is the only other option. I hope this helps.

Ryanamber
Ryanamber
in reply to Jenstir75

hi lovely feel for you..worth trying these hormone pills..great if it surpresses the endo and has an effect on it..i had the coil and took the pill pre hystorectomy unfortunately it did bugger all.. May have a little try on the mini pill for a few months see if it makes any difference..but I'm not that optimistic 🙄 did they say anything else about your cyst?x

Jenstir75
Jenstir75
in reply to Ryanamber

Last time it was measured was 5x6cms. I've had an MRI recently and just waiting to go back to consultant. He did say it is an endometrial cyst and he could just drain it but as it came back so quickly after the last surgery it's probably best to remove the ovary this time.

Ryanamber
Ryanamber
in reply to Jenstir75

let me know how you get after seeing your consultant..and best wishes to you x

Scholar90
Scholar90
in reply to Jenstir75

Is Orilissa an option in the UK? I currently use that after having tried Lupron many years ago (EEK) and it works very well with less side effects

Hi, to be honest I don’t think we ever get rid of it. I had total hysterectomy many years ago and have had it ever since. In fact the pain never went away. I was put on oestrogen which is no good for endometriosis and was on it for 20years. The next step for me is excision. Not sure whether to go for the op or not. It’s just learning to live with it. It’s not life threatening but is however life changing. Wishing you all the best xx

Was your previous hysterectomy done in one of the specialist centres:

bsge.org.uk/centre/

I am on a waiting list to have hysterectomy, bilateral oophorectomy and excision of endometrial adhesions and uterine fibroid at end of year by a Specialist Nook Dr.

bless you best wishes ..my consultant is an endometriosis specialist but my op was at Jr hospital in Oxford x

You need to go to the right doctors. Go on Facebook to Nancy Nook endometriosis education, it’s a good mine of knowledge along with all the endometriosis specialist listed on it world wide.

Ryanamber
Ryanamber
in reply to Dakrav

my consultant is an endometriosis specialist hun..I was just wondering if anyone had the same thing as me...ie has their endo grown back rapidly x

Dakrav
Dakrav
in reply to Ryanamber

So sorry to hear that. I hope you feel better

I’m so sorry you’ve had this. I’m wondering—when you had your surgery, did you have endometriosis excision surgery along with the hysterectomy?? Also, have you been seeing a reproductive endocrinologist for treatment of your endometriosis? I know it can be so much to take in, but that is the first thing to do as an OBGYN isn’t versed enough for a specialization like endometriosis alone. A hysterectomy alone is not a treatment for endometriosis and definitely not a cure, I hope you weren’t told that? Endometriosis feeds off of estrogen and since it sounds like you still have your ovaries, you are still ovulation and this still making estrogen and thus feeding endometriosis. You may have had endometriosis cells still in there or creating new ones. But! That can be treated. Are you able to take hormones? That’s the best way to suppress endometriosis is suppress the ovaries: estrogen? progesterone? I had my endometriosis excision surgery (my third) last November and I’m currently on Orilissa and it’s helping. The first thing to do is to get excision surgery to remove ALL endometriosis they can by an endometriosis specialist then treat with hormones. Hope you feel better soon.

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