Is HRT so bad?

[Guineafowlrach]

I told a friend yesterday that I might need a hysterectomy (for Endo), and she said ‘oh I do hope not as you will be put on a very strong dose of HRT - surely there’s another option?’. What’s the big deal with going on HRT? Maybe I am not clued up enough but should I be more scared of it? I personally think it sounds great, especially bio-identical.. reducing risks of osteoporosis, heart disease, dimensia, etc… is it really so awful? And although I’m 39 I really don’t want kids so I am happy for them to take the lot if they need to. Surely the HRT dosage would be monitored and adapted so as to try and balance you out without encouraging the return of any remaining endo(?)

[mich]

Why don't you research the private HRT clinics in London? They do bloods and monitor hormone levels, they also give testosterone.

I think you could be peri menopausal so your hormone balance between oestrogen and progesterone is being affected.

As progesterone is a precursor to oestrogen its level drops before oestrogen and therefore you may have an abundance of oestrogen unopposed by low progesterone levels and the endo is thriving off the higher levels of oestrogen.

Please Google Proff. Janice Rymer, london, specialist in endo with great sensitivity and highly regarded by her patients.

I wish I had known about her in my late thirties, I would have gone and seen her.

Good luck

[mich in reply to mich]

Also look up Serenity cream, natural progesterone replacement

[Guineafowlrach in reply to mich]

Thank you mich- appreciate the good advice. Will check out the professor right now. I am self pay private for this whole thing, purely because of the scary long nhs wait times right now and will stay private for any HRT stuff too. There is a menopause specialist just set up in my local town but this lady you suggest perhaps has more endo related expertise…?

[Guineafowlrach]

Just came back from the Harley street laparoscopic surgeon chat. He said he won’t operate until everything else is ruled out (even though the scans show extensive endo, because women can have all that and no pain). So he wants me to do 3 months of physio to help with the pelvic pains, plus a healthy gut diet to help the bloating, then after that we try 3 months of induced menopause. What I don’t get is, sure the bloating and pressure inside rear could be gut health and the lower back pains and stabbing abdo pains COULD be muscular skeletal but really? All at the same time I suddenly have these two things happening to me at the same time I show extensive endo? He said my periods aren’t excruciating so he’s unsure it’s endo. Hmmm… guess I’ll report back in another six months. 😴

[Outsidethelines in reply to Guineafowlrach]

I do understand your frustration because you sound like you just want your problem sorted asap, but I’m actually very impressed to hear of a surgeon who wants to investigate whether physio and diet can help first, before resorting to major surgery. Who is he? He sounds right up my street. My daughter suffers from excruciating endo and is not being offered anything except drastic surgery, and a very long wait for that. I’d raid my life savings to have her see a specialist who takes a more wholistic approach

[Jane884]

I find this rather strange, as you surely need that endo removing anyway. If you have extensive endo, and it isn't the cause of pain now, then it will be in the future. It's a progressive disease and it spreads to other organs, then requiring more invasive surgery.

If I were you I would get a second option on this. You need a laparoscopy to identify the full extent of the endo, and if I were you excision on any endo found. A hysterectomy isn't a cure for endo, only a cure for adenomyosis, so why this is on the table after just a scan I don't know.

The information you're getting from your team seems to be all over the place. It's not like you don't have endo, so at the very least they should be skipping to the part where you try out hormone treatment (if that's what YOU want) but if your endo is extensive, this isn't the answer on its own either.

[Guineafowlrach in reply to Jane884]

Yes I kind of think the same thing. But he said there are plenty of women walking around right now with extensive endo and no symptoms so he said 'we should always assess the person and not the scans'. And the key thing he was waiting to hear was 'heavy panful periods'. Sure, they're bad but not that bad. Damn. He immediately booked me in for physio so I guess I go from there... I do worry about the fact it is already right near my kidney and has messed up one of my fallopian tubes. But he wasn't worried. And he came highly recommended and BGSE certified. To be honest the hysterectomy thing is one possible option, and its mainly me who is most keen on it, as someone who doesn't want kids and just wants the whole lot out, to get onto a nice stable balance of HRT. Maybe that is weird, maybe its wrong but that's where my head is at.

[EllieGem]

I can’t comment on the surgery, however I have Prostap and tibolone and I’m glad I’ve decided on the tibolone because the few days I had without the HRT, were not pleasant With the HRT, I feel loads better. No hot flushes etc

Everyone has differing experiences, however you don’t often hear the good ones. This treatment has given me my life back and I would always champion the HRT personally

[Sheep2016]

Hello. Will it definitely mean ovaries will be taken out too ? I have hysterectomy but gynae told me that having seen the ovaries, they are good and given the condition (I was in late 40s then) ovaries are left intact. Though I am going back for annual check up though, just in case. If you could keep your ovaries then you won't need to be put HRT. Yes, lots of talks about that and long term medication always come with some sort of side effects. With ovaries intact, then you can save yourself from that trouble. Just go for annual gynae and no side effects.

Yes (agree with the others), better read up as much as you and it will help understand when you see the doctors. For sure I am happy to normal life back without the painful, bleeding uterus and living on pain killer which were making me like living dead.

[Guineafowlrach in reply to Sheep2016]

Yeah they haven’t discussed whether I can keep my ovaries yet - it’s all about physio and probiotics right now. I have decided to get a second opinion as, like you, living on pain killers is not cool and I hate taking so many. I know keeping the ovaries saves going on HRT but I think I would go on HRT at 50 anyway, so what’s the harm if it’s balanced correctly? Lots to think about..

[Belle76]

I feel HRT gets a bad rap, because years ago they done some research and it wasn’t good, now we have more choices and it is made from natural products like yams. They can not change the leaflets that have all the old data from the last research unless they do another one. I got all my information from dr Louise Newson she is a specialist in menopause, has her own clinics too.

[Guineafowlrach in reply to Belle76]

Dr Louise! Yes I have her wonderful Balance app and have watched all her videos, so useful. She isn’t taking any new patients till 2024 I believe (shows how good she must be), but said I could have a video appt with one of her colleagues (she’s in the midlands so guess that’ll have to do). Before I discuss HRT with her I just want one surgeon to actually agree the endo is causing my pain. I mean - come on guys?!

[Avourneen]

Your London specialist sounds good. The thing is excision and or hysterectomy is not a brilliant cure. Often after excision surhery you can get mor epain and complications than before cause by adhesions which are caused by the operation. Hysterectomy s can cause the other organs around the womb to prolapse and cause complications in that way. I think almost everyone on here who has endo is in really bad pain. I wouldn't have it done if you aren't in pain, you could end up being in worse shape after the op.

I think doctors have to be very careful which HRT they pescribe after a hysterectomy if you have had endo. One endo specialist told me he would not recommend it at all as it can make the endo grow more, but he is in a minority but if you are havinga complete hysterectomy with ovaries out to stop eostrogen prodcution tehn putting more eostrogen in seems a bit contradictory. I'm sure the doctor would give you a combination of pro/eosto.

The one thing I can say is if you look at studies on the rates of endo coming back if only have the womb removed it is far more likley to come back If you have the ovaries removed it is far less likely to come back. I can't remember the stats but there is a huge difference so check this. Your doctor sounds incredibly responsible, a lot of private doctors will just say you need a lot of treatment when you might not just to get the money. So a doctor who is not rushing into iis probably areally good doctor. I think the problems after a hysterectomy can be far more than taking HRT it's a big operation so you should only have it if you really need it.

Often hysterectomy in women with endo is for adenomysiosis, did he say you have that?

There was a study years ago into HRT and it showed an increasd cancer risk but I think that study is now regarded as not very accurate but I think you need to look at the wider complications of hysterectomy and what type you are going to have.

Can you let me know the name of your doctor ? he sounds very good.

[Guineafowlrach in reply to Avourneen]

Hi, let me DM you as I believe I’m not allowed to say specific names on here….

You make some excellent points here and the very fact my doc is pushing to explain every option before surgery is a good thing I guess. It’s funny how you spend so long waiting to see them that you make your mind up about one route. I just don’t want it to come back as it is in a lot of places and close to kidneys, so that makes me think they should take the ovaries. I heard from dr Louise Newsons website that Oestrogen given via HRT after a hysterectomy is different from the oestrogen that is making endo grow now because ours is fluctuating wildly (mine is as it is very cyclical pain), and HRT oestrogen can be given as a low but stable amount each day which wouldn’t cause such reactions from any remaining endo. Who knows, we seriously need a new study of all this.

[BlueGiraffe9]

I was the same, thought if would be best to have the whole thing out but then I did a tonne of research and realised for me its unlikely to control the pain. The more I read the more I can advocate for myself because this is a tough one to get diagnosed/treated properly it seems. I'm currently going for my first session with a women's health physio next week and I'm attempting some anti inflammation diets.

[Guineafowlrach in reply to BlueGiraffe9]

This sounds very similar to me. Let’s hope that all this pelvic pain is treatable with physio! The person I got sent to is ££££ so I really hope it works! If it turns out all I needed was some Yakult and a few leg stretches I’ll be amazed but worth a try.

[MelissaHewitt87]

I’ve been on decapeptyl injections due my 6month dose one and then I’ll be stopping them because I won’t take HRT, it’s everyone’s choice theirs no alternative I went to Holland and Barrett and bought some things but my memory is bad so I haven’t took them I’ve simply just coped with all menapause symptoms without anything!

My reasons well I’m one big anxious mess basically and my friend said to me exactly what yours is saying now and I asked why? She said cause hrt causes cancer and that’s how she lost her grandmother…. Now normally hrt doses are pretty low and the hospital will tell you there’s only a small risk of not any at all due to the small amount of it you’ll be taking…

However I’ve got that in my head now… and I can’t bring myself to do it so I’m opting for laparoscopy… also a full hysterectomy doesn’t necessarily get rid of endo so I have no idea why they push on it so much!!!

I know of someone had full hysterectomy and is full of endo!!!!

[Guineafowlrach in reply to MelissaHewitt87]

Yeah it’s a minefield of information and misinformation isnt it? So hard to find a route through it all. I hope that your menopause symptoms are not too bad. Since the advent of bio identical HRT (yams, basically), the benefits that come from not only controlling fluctuating and declining hormone levels but also reducing chances of heart disease, dimensia, diabetes, etc, etc, is very appealing to me right now. They really need to do a new study on this latest HRT and update the information people are given. If men got menopause there wouldn’t be an issue!!

[MelissaHewitt87 in reply to Guineafowlrach]

Yeh it’s very daunting to be honest since I was told I’ve shoved it all to back of my mind over wise the anxiety just takes over me…. I’ve a 10 cm cyst attached to my bowel and uterus I’m absolutely terrified of it bursting and wasn’t going to have the jabs but did in hope itd shrink and stop growth in 35 years old if I need the toilet I must go asap or I’m doing accidents and it’s right getting to me now , not even on wait list for surgery yet but seeing my consultant on the 1st March to discuss surgery and for me to possibly go on the mini pill as they don’t want me on the jabs past 6 months without hrt due to bone density etc

[lauraca1]

Hello, I had a laparoscopy and excision of my stage 3 Endo and it helped a ton with pain. It was also a highly experienced endo surgeon which helps. I’ve heard some pretty awful stories of hysterectomy for these issues but everyone is different.

[Minnie153]

Hi,

You will need enough oestrogen replacement as you need, it’s that simple. You will most likely need to take progesterone along with oestrogen to prevent any unfound endo from continuing to grow. Oestrogen is usually in topically applied gel which you titrate until your symptoms are controlled. Your friend is misinformed, check out Dr Louise Newson or the balance website, along with NICE guidance for menopause this will help clarify things for you.

Good luck

[Guineafowlrach]

Totally agree - and I love Louise Newsons website. So appreciate all her knowledge. Thank you for this 🙏 xxx