Surprise return!

[Marlie3]

Many years ago I had a total hysterectomy after suffering from endometriosis for 14 years. I'd had my children and was fed up with the constant pain and trying various treatments. After different tests to rule out certain things, today I was told it had returned and was attached to the blood vessel on my bladder. I can honestly say I was extremely surprised considering my hysterectomy was 18 years ago!

[Meerkatcrazy]

Hi.

How on earth does it return after hysterectomy!? I wonder if some tissue have been left behind. What treatment have you been offered? I'm on zoladex and considering hysterectomy but this was something that concerned me - endo returning as Ive seen a couple of posts regarding this. There never seems to be a cure 😣 Hope the pain is much less for you than you probably had previously. X

[Marlie3 in reply to Meerkatcrazy]

Hi, to be fair I can honestly say it was the best thing I did, as it gave me my life back. Although there is no cure, and I'm extremely surprised it's returned, I've had a pain free 18 years so can't complain x

[Meerkatcrazy in reply to Marlie3]

That's how I feel about zoladex but its just a short term treatment. Glad to hear its been great for you for such a long time x

[luthien]

Hey, sorry to hear that.

Unfortunately there isn't enough info out there for GPs or general gynae specialists to pick up that a hysterectomy doesn't get rid of endo. As we are all mammals, we all produce oestrogen therefore having a complete hysterectomy still leaves some oestrogen and thus endo can regrow. It's origins aren't thought to be directly from the uterus but random pockets of cells outside the uterus that just happen to be like the lining of the uterus. Endo needs oestrogen to grow but in large enough amounts it can produce it's own oestrogen. A hysterectomy can be one form of treatment, as well as hormones to manage the oestrogen levels which can be enough to slow regrowth, however regular surgery is required to remove endo regrowth if symptoms are severe. What's worse is the severity of symptoms don't correlate to the amount of endo, with regrowth occurring possibly in different places and at different rates.

It's horrible, but there currently isn't a cure.

[Abbbb]

Hi Marlie3,

I'm sorry to hear it's returned. I'm 33 and just had a hysterecomty due to rapid re-growth of endometriosis. there were other issues for example i could not longer take contraceptive meds for various reasons, and zoladex injections had decimated my bone density so i had no real options left.

I was initally under the impression i would not be taking HRT as endo feeds on estrogen, however because of my age and my bone density issues my consultant has put me on a very very low doage of estrogen gel. Can I ask, did you use HRT medications at all? and if so which ones? and did you stick to the endometreosis diet etc to keep it in control?

So sorry to be selfish, just i'm all too aware that even after this op it may come back and i want to keep my chances of reoccurance as low as possible.

really hope they treat it quickly and efficiently for you, and this is your only replapse of the condition xxxxx

[Marlie3 in reply to Abbbb]

Hi Abbbb, I was 28 when I had my hysterectomy in 2001 and was never told about any kind of diet.

I tried patches but seemed to be allergic to them so have been on tablet form ever since. Thankfully that suited me.

[LH38 in reply to Abbbb]

Hi Abbbb, I am so far waiting for a hysterectomy for similar reasons as yourself albeit the consultants made me get over 40 to even put me on the list. I had two years of Zoladex and contraceptive pills do not work but I have gone along with it as the pain has been manageable till now I am ready for a hysterectomy.

I am replying to you as I have been told because I can not have meds with oestrogen because they give me migraines and so means I am a higher risk of having a stroke on them. I have been advised I would have Alendronic acid for the protection of my bones and Clonidine to help with hot flushes? Has your consultant put you on these? I am not sure I am able to try a gel but do you find this helps? How long ago was your hysterectomy? Would you recommend a hysterectomy? Recovery just like a laparoscopy?

Sorry for the questions I am finding the internet a mind field.x

[Abbbb]

So sorry for the delayed reply I've been going through a lot personally and had to take a break from this site I still get quite emotional sometimes 🙈

I'm currently using an estrogen gel, my consultant put me on a low dose which is 1 pump a day but I found I can reduce most of my symptoms to nothing by doing 1 pump every 3 days.

My consultant didnt give the drugs you mentioned for the bones, but I am seeing a second consultant in december regarding my bone density as it seems to have dropped in density from the zoladex injections. So I may be out on them shortly...I can keep you updated!!

There is also progesterone creams, I cant use progesterone because it affects my mood insanely badly, almost instant depression and anxiety, but you might find a very light dose of both works for you maybe. I can understand they dont want to introduce additional estrogen, however right now even with zoladex injections you still have some estrogen being produced, it doesn't get rid of all of it. So for me, having your ovaries removed and getting rid of the source means you could introduce a little estrogen gel and be at the same level you were on the zoladex injections which should increase your risks for stroke etc - does that make sense?!

I had the hysterectomy and ovary removal through a laparoscopy. The laparoscopy was fine, but you are under the same restrictions as if you're fully cut open, internal stitches need time to heal, cant lift anything over 1kg for 6 weeks etc etc etc. You're leaving s massive void and you're body has to adjust and not allow your organs to fall out if position and feel that void. I had it in May, now I'm feeling fine, I'm back in the gym almost back to how I was but I've had to except high intensity activities may be out for good. Even running it's fine as a jog for 10-15minutes but as I started increasing the intensity the pain crept in...pulling pains. So I stopped.

The menopause symptoms I didnt find that bad but I was playing the odds as to how my mum and women in my family found it. Brain fog and insomnia was actually the worst which is why I had to use the estrogen gel. Keeps it in check.

But the recovery is different for everyone. All I would say is I was told I would be on my feet at 2 weeks no problem. That was true, but I was only on my feet. I couldn cook, lift my kids, fold clothes......that took nearly 2 months. N I was very fit before I went in.

I could bore you for hours....why dont yous private message me specific concerns you have and I will do my best to answer? Also please look at hystersisters....its an American site but AMAZING for support and answers...I wouldn hav got through it without that forum.

So wish you the best of luck, and I promise I wont take so long to answer this time! Xxx