Endometriosis and menopause

[jaclyt]

Good evening, I’m looking for some advice from others who have been through similar.

I am two weeks into induced menopause through ovaries removed. I’m recovering ok from this but surgeon said I do have stage 4 deep infiltrated endo which he couldn’t remove as not a specialist.

My query is whether I should start on HRT, knowing it could make the endo worse?

Or start on it and take the risk as there are many benefits to taking the combined HRT.

I do feel the menopause will have a significant impact on me as I’ve suffered from depression anxiety, mood swings for most of adult life. So can’t imagine I’ll be let off with this.

I don’t have any endo specialist involved to guide me and don’t think my GP will be totally clued up on this.

Has anyone had any experience good or bad?

Thank you x

[Lindle]

Why have you had your ovaries removed?

[jaclyt in reply to Lindle]

I had an ovarian cyst and ovary removed many years ago due to endo. This time I was very concerned it was ovarian cancer, as my mum had it. I’m still waiting for results of this. But now I have no ovaries.

[Lindle in reply to jaclyt]

Oh I see - I hope the results are OK.

Are you under a specialist centre for your endo or does it not cause you pain?

The recommendation would be to have combined HRT - it is oestrogen only that is associated with recurrence so I would consider it for the benefits.

[jaclyt in reply to Lindle]

I’m not under any endo specialist but if it gets worse then I’ll request a referral.

[Endos]

I had a hysterectomy in the end to get rid of my endo as I was in so much pain so like you I went straight into menopause. Im on tibolone which is a steroid version of hrt as I was too scared to take combined HRT for the fear of starting off the pain again. Tibolone doesn’t cause me pain and was recommended by my endo consultant

[jaclyt in reply to Endos]

Have you had any bad side effects or bleeding?

[Endos in reply to jaclyt]

No nothing it’s been great no pain at long last and no bleeding

[catsrule40 in reply to Endos]

Hi, I'm similar to you. I had 5 years of pain before finally having hysterectomy and also bowel surgery as had a large chocolate cyst stuck to my bowel (including a temp stoma). I was prescribed Tibolone by my consultant (an endo specialist) but in the last couple of weeks when having a check up with the HRT nurse at my GP surgery, I'm told Tibolone doesnt give me what i need as its a steriod and not 'body identical'. She wanted to put me on estrogen only HRT patches.I told her about my concerns of endo coming back and so she asked the Gynae GP for advise and then came back to me insisting i should be on estrogen only HRT. She said 'if you start to get endo symptoms again, we can look at giving you some progesterone'.

Very easy for her to say that I thought! I've just been through 5 years of hell and major surgeries because of endo so its not just a case of 'trial and error' as she put it, because I'm so scared of endo coming back

[Greenlady48 in reply to catsrule40]

Hi thereDid your pain go after the hysterectomy?

I’m curious as I’m on HRT because without it my anxiety and mood swings are unbearable.

I’m waiting for a hysterectomy as I have bad adenomyosis.

I’ve been told that the endo pain may continue

Managing these symptoms is a nightmare 😩

TIA

[catsrule40 in reply to Greenlady48]

If you are having a full hysterectomy then your pain should be much much better afterwards. Pain from endo went completely after my surgery and touch wood it stays that way. I felt like a new woman until i developed a large hernia from my 1st surgery but i'm on the mend now and apart from the odd twinge, im pain free. I do however still worry about endo coming back and whether i'm on the right HRT. I'm 43 and worried about long term health affects if i'm not on the right one!

[Greenlady48 in reply to catsrule40]

AhThankyou so much

That’s good to know x

[Endos in reply to Greenlady48]

The pain went completely it was brilliant and has been since. Obviously pain was there for a while after op but it settled down. I paid for it privately in the end as I couldn’t handle the pain and drugs I was on. I’m still paying for it now only another 5k to go but it was sooooo worth it I have my life back x

[Greenlady48 in reply to Endos]

I’m also thinking of going private. I’ve been quoted 7k and to be honest I’m a nurse working for the nhs so I know how rubbish they treat patients with the aftercare. Thankyou so much for your reply x

[Endos in reply to catsrule40]

They tried that with me but similar to you I would rather has some menopause symptoms rather than the pain for years we all experience. It’s all very well for the doctors to say no it will be fine but I have always been advised to go onto a combined hrt. Estrogen is what has caused us all so much pain and I felt I couldn’t go back there !! Good luck and let me know if you do go on it x

[jaclyt in reply to catsrule40]

From what I have read with endo then it should be both oestrogen and prog

[Greenlady48 in reply to Endos]

Hi. Don’t mind me asking but how old are you?

I’m awaiting a hysterectomy for my adenomyosis pain and endo.

I’m already into menopause and just want an end to it all now.

I’m also on the combination HRT as I didn’t want anymore forced bleeding.

[jaclyt in reply to Greenlady48]

Hi I’m 47.

[Greenlady48 in reply to jaclyt]

Ah ok. I’m 51 and according to blood tests now post menopause 😬

[Natagee]

Hi, I hope your recovery goes well. You are your own guide. You know your body and mind and know if you are coping or not. I think trying HRT if you need to is always worth it. I have 1 ovary left and endometriosis the same as yourself. I'm just about coping with pain and menopausal symptoms but feel I will be asking to try HRT soon.All the best x

[jaclyt in reply to Natagee]

Maybe I just wait a while and see how I am with no meds.

[Narcica]

Hi jac, I have deep endo stage 4 for many years. I still have everything but on Decapeptyl+Mirena+estrogel combination. It does help me. Estrogel helped me with hair loss somewhat as well. I had a couple of removal surgeries in the past 2 decades but it grows back quite fast unfortunately. Hence the hormone treatments instead of hysterectomy. I went through several specialist and they all agreed that hysterectomy isn’t always the solution. Especially in my case when my digestive system is affected by the growth. I hope they’ll find the best solution for you x

[Brambledoggy]

I’m wondering about HRT but scared of it reactivating my endo lesions. I believe combined HRT is best?? Terrified of a mirena coil as my uterus rejects anything and is super sensitive. Even a vaginal swab put me into A&E and my recent hysteroscopy was unbearable, I had to be sedated. I’m so confused by HRT.

[jaclyt in reply to Brambledoggy]

I’m scared too. So many side effects to medication and also think it may make endo worse. Maybe I just try without anything for a while? But there are risks to that too. I too can’t bear examinations. Tried the coil years ago and that was dreadful

[Brambledoggy]

I’ve been “toughing it out” with no meds, and no hormones. I’m 51 and apart from a couple of odd bleeds (all tests came out okay) after being period free for 14 months my endo seems to have settled down. Don’t speak too soon!! Don’t think there are “that” many of us out there. By that I mean, history of endo, menopausal, all our bits still in tact, (realise you don’t have ovaries so that’s trickier for you of course) various operations to excise endo lesions, not on HRT. Every time I switch on the TV there’s someone telling me I MUST take HRT to live longer, have a better quality of life, not get osteoporosis, risk of stroke lessened, etc etc etc. I feel like a Guinea pig, try this, adjust that, take that hormone, don’t take that hormone. Honestly now don’t know which route to go down. I’ve had thickening of the womb, but my hysteroscopy came back normal, apart from a polyp which was benign so maybe how’s the time to get some HRT. Not sure which gynaecology route to go down. As I said very confused. If best if I were to I ask 5 GP’s they all say something different.

[Greenlady48 in reply to Brambledoggy]

Wow. Sounds like we are all exactly in the same boat.

I started taking HRT 4 years ago when I was 47 but before that my symptoms were terrible

I had terrible anxiety the brain fog was horrible. And the sweats. Nearly 100 a day!

The sex drive had gone and I felt desperately unhappy. My poor family and friends got the worst of me. It was severe

Now trying to manage both the endo pain and the madness

[Brambledoggy in reply to Greenlady48]

Do you have a history of endo? What HRT exactly are you taking?

[jaclyt in reply to Brambledoggy]

It’s had endo for long time, poss diagnoses on 2004, I think. I’m not yet on HRT, seeing nurse practitioner next week to discuss further.

[TinyRoo]

Hi I'm on Prostap and my endo consultant has advised to take Tibolone after my 3rd monthly injection since my hormones will be all over the place. I'm also on the medroxyprogesterone injection.

I had the same worries as you and it has affected my mood and I do struggle with anxiety but the main side effect is fatigue (2nd injection in). I'm hoping HRT will help this.

All the best

[Greenlady48 in reply to TinyRoo]

I’m interested in the tibolone Let us know how you get on with it

I’m on the patches at the moment

Good luck

[Fenblue]

I’m in the exact same position, I’m 3 days off 2 weeks post surgery and I started the injection about 3 days post op with the start of my period. I got HRT prescription at the same time and my surgeon said it was really important to take it alongside for the menopause side effects, it also protects your bones - there isn’t sufficient hormones in the HRT to re-create/effect the endometriosis - the whole point of the (for me 6 months) induced menopause is to give your whole body/womb/affected area a break - think of it like a factory reset! I hope that helps a bit. All a bit daunting, but for me I think the benefits of taking HRT for a short period massively out ways the risk of taking it and the menopause symptoms it helps with. I hope you’re ok xxxx

[Nelly_Star]

They put me into the menopause with injections (sorry can't remember which) while I was waiting for endo excision. My consultant said to take Tibolone because it would protect my bones but not allow the endo to get worse. I actually felt better than I had in years while on it.

[csytasista]

Hi. To stay on Zoladex more than 6 months I had to be on HRT. I reacted badly to one type but tibolone worked out ok for me. I'm waiting on appointment but next step that had been discussed before was removal of my ovaries (only one is functional).. my understanding was that if they take the ovaries out but leave the womb, they want you on progesterone at least, otherwise there can be issues caused by the womb lining building up? There is a concern over bone density loss and some other things which is why the oestrogen is offered, but I do think that there is more of an issue with lack of progesterone? My own experience of chemical menopause was that my moods were a lot more stable, but I did feel flat even with the HRT.I felt like the physical endo symptoms were slightly worse on tibolone than with no HRT (on Zoladex), but the tibolone helped with the menopause symptoms, so was a all a trade-off really! None of this is easy, I hope you find the support and some answers. Take care

[catsrule40]

After my full hysterectomy i was put on Tibolone but you should talk to an endo specialist to find out what's best for you Good luck and glad you're recovering well