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[joziel]

Is anyone here peri-menopausal, on HRT, and also have/had endo? (Or suspected endo?) And still have their uterus and ovaries?

Can I ask what HRT you are on? And dosages/frequency? How is it working for you?

I have a history of mild endo (diagnosed after a lap) and have been on Cerazette/desogestrel to suppress it for the last 7-8 years. It has done this well, but it is suppressing all my hormones too much now (estrogen and testosterone) plus fluctuating levels due to peri. I have every symptom in the book now. (Joint pain, night sweats, migraine, vaginal dryness, feeling permanently jet-lagged and spacey....). My FSH was still 4 just before Xmas, but we know that doesn't mean much.

So - I need estrogen. And then I want testosterone. But I and my GP are not sure how to negotiate the progesterone side of things. My GP says that the HRT progesterone (I would want utrogestan) will not be sufficient to suppress my endo during peri-menopause even if I take it continuously??  I don't know if that is true, because she is not a menopause expert or totally up on stuff. I listened to a Louise Newson podcast where she interviewed endo specialist Chris Mann - and he said people with endo can safely take HRT the vast majority of the time (with the progesterone continuous, even during peri). 

Other relevant info:

  I really want to come off Cerazette because I also feel flat, dead and have zero libido. There is more to life than just living afraid of endo flare-ups!

I am very afraid of trying the Mirena.    I have spent hours trawling the internet and reading people's experiences with it and it seems that either it is great, amazing and perfect and they wished they'd tried it sooner - or they have continuous cramping, incredibly painful insertions, lost cords and painful re-findings of them, perforated uteruses, mysterious back or abdominal pain which they are not sure whether to attribute to the coil, occasional jagged feelings during exercise, and so on and on. So I would really like to keep it as a last resort! I haven't ruled it out.

I have a GP appointment in 2 weeks for some swabs and pelvic exam, just to rule out other things besides VA. She has given me Vagifem already but I'm still on the loading dose. At that appointment, I will at least plead with her for some transdermal estrogen to use alongside the Cerazette just for a few weeks so I can feel a bit more normal and make a well-considered decision on the progesterone. Because making a decision now would be like trying to make a huge decision whilst jet-lagged and unable to think.... (I am not sure if she would even agree for me to try utrogestan - but I have appointments with 2 menopause clinics coming up a bit later and I'm sure can get them to prescribe it for me, so hopefully some estrogen now can tide me over - it might even help the transition not to change everything all at once, but to add in the estrogen first before changing the progesterone?)

[CLKD]

     trifecta indeed, hopefully some1 will be along with advice. 

[joziel]

Sob, no one answered my question - but I thought I'd update the thread. Who knows, someone else in my situation might do a search and it might be useful....

I had a video consult this week with a doctor from Newson Health, who was lovely. It was supposed to be 45mins but overran to almost an hour and I felt I was given loads of time. We discussed all the options and ideas.

It was very much 'patient led'. Which is good, although when 'patient led' is taken to an extreme it can basically feel like you are just asking for something and getting exactly what you've asked for - and then you're not sure if clinically that is actually the best thing  or if you've basically just prescribed yourself something, via someone else     

This doctor thought there was a very good chance I would be totally fine with my mild endo, with a continuous HRT regime. So she has told me to come off the Cerazette and prescribed me Estradot 50 (got to cut in half to 25 for the first couple of weeks to start slow) and utrogestan 100, continuous. If I get heavy bleeding or any endo pain, to increase the utrogestan to 200 if it doesn't settle. If even that doesn't work, then the Mirena is an option for the future. But I don't have to start there. (She also sent me testosterone and seemed happy for me to start that, but I'm going to wait because I've read that it's important to get estrogenised before adding testosterone and I'm not going to know what's doing what if I start it all at once(!).) So - I now have all this stuff...

Then today I got an email back from a gynae I'd contacted for advice (email consult), and she advised that I should stay on Cerazette and add the HRT in on top of this. 

But - I don't really want to take a synthetic progesterone like Cerazette/desogestrel. I think being on this for 8 years is part of the reason peri-menopause is happening so early for me, I feel like it has suppressed my own hormones and ovaries too much. I have zero libido on it and I feel flat and dead and easily anxious. I worry that taking Cerazette and also the HRT progesterone is going to be too much progesterone and lead to progesterone-symptoms.... Plus when you're on Cerazette, you can't accurately measure estrogen and progesterone or testosterone - it interferes with running bloods on those hormones. (You can really only run FSH!) So, how will I monitor my HRT use and know whether I need more estrogen etc, if Cerazette is messing with everything....?   

So I think I'm going to go with the Newson Health recommendation and give that a go, with the knowledge that there are other things to try (more utreogestan, Mirena) if I do start to get endo issues again.

[joziel]

Well, here's another update...

I started on 25 Estrodot patch back in March, along with utrogestan 100mg - and I stopped the Cerazette/desogestrel    I bled lightly for a few days and then stopped and had no endo pain or symptoms. The majority of my worst symptoms stopped, but I still had a few.

After 2 weeks, I upp-ed the 25 to 50 Estrodot (as advised). After a week at 50, I bled for about 5-7 days. But still only light normal cramping and no endo pains.

After another week, I started the testosterone. By this point, I felt fantastic. I was also using Vagifem 2x weekly and Ovestin externally 2-3x a week, along with YES OB. The only symptom I still have at all, is joint pain and constipation (more on that below).

The complication is that, after about 3 weeks at 50 Estrodot, my ovaries suddenly "woke up", it felt like    I bled for about 3 days and I had sharp stabby pains from both ovaries and was very much "aware" of their presence even when they weren't hurting(!). I still get that very occasionally now, but it's much better. More worryingly, I did then start to get some of my old familiar endo pains back in the old familiar locations from 8 years ago.    I don't know how much this was due to starting HRT and how much it was due to stopping the Cerazette, but I suspect mainly the latter. Maybe I should have taken the advice to stay on the Cerazette - but I also felt like I had to try and at least give myself the chance to stop it. I am currently just giving it some time and waiting to see if it settles down. The pain is not associated with bleeding (but neither were these pains in the past when I had endo 8 years ago), they happen throughout the cycle and are just weird aches and twinges and dull pains in specific places I've come to learn. (Off my left hip, off my pubic bone on the left.)

Besides the possible endo return, the other complication is that I've been suffering from really bad constipation. I think, due to the utrogestan. I eat loads of fibre (chia seeds, flax seeds, banana, 2x kiwis, lots of veg and healthy foods - low carb and no refined sugars) and I take magnesium citrate/glycinate 300mg daily, triphala, Optifibre and 1-2 Dulcoease stool softeners a day - but it is a constant and daily battle. My gut just feels really inert and still and like the lining is thick...

I don't know what to do about the constipation. It may be that I need more estrogen - and that will get my gut working. Or perhaps I need to try a patch with a synthetic progesterone, so that it can bypass my gut and liver and hopefully not affect it so much?? I don't really want to try the Newson idea of increasing the utrogestan to 200mg, given 100mg is making me constipated! We also don't have research into using 200mg utrogestan on a continuous basis (daily) long-term for many years.    I don't want to take only 100mg vaginally, because I worry that will not suppress endo in other locations around my abdomen, it will only work on the uterus. (For the same reason, I'm a bit reluctant to consider the Mirena coil - in case it only works locally on the uterus and not so much on other deposits. I know it's supposed to be okay for endo sufferers as HRT progesterone though... )

I have an appointment with a GP locally to try to get some bloods run. (Estrogen, testosterone and SHBG plus T3 and T4 for thyroid.) But I don't know if they will agree - given that I am getting HRT from a private clinic. I will try...

If the endo issues continue or get worse, or if I need more estrogen, I will probably have to go back on Cerazette as well as the HRT. I don't really want to do this. I worry about taking synthetic progesterone at all, let alone combined with utrogestan. Who knows what so much progesterone long-term is doing, in terms of BC risk...? We just don't have the research on it yet. Maybe again I could try a HRT patch with a synthetic progesterone in (norethisterone??), as that might help suppress the endo better than utrogestan - and I could switch to utrogestan when I am properly menopausal and my ovaries have stopped functioning...?

And maybe I just need to have an ultrasound, check all is okay and then accept these pains are 'normal' for me and get on with my life. If I can do that. (I am a worrier.) If I don't bleed and get endo period 'attacks' anymore and it's just these occasional abdominal pains, perhaps I just need to learn they are normal for me and accept them rather than taking even more progesterone.

Anyway, that's an update. I don't know if anyone reads this but I figured there might be some person in the future with endo and wanting to start HRT or on Cerazette and it might be useful if someone does a search for it. It's all a bit of a minefield.

But one thing I know for sure: My body needed estrogen badly and was falling apart and failing without it. No matter the struggles of figuring out a progesterone solution and not stirring up endo in all this, I don't regret starting HRT and I will choose to live like this with estrogen, than without.

[Floradora]

Hi Josiel . I’m post (age 54) not pre menopause but had severe endometriosis for years, multiple laparoscopic surgeries etc but still have ovaries and uterus and can give you my experience for what it’s worth. Have also been on various forms of ‘the pill’ and progestogen treatment for the endometriosis in the past. The key points for me .
Utrogesten while being the ‘natural ‘ progesterone was absolutely useless for me in managing bleeding, suppressing endometriosis growths etc. the main problem is that for any effect it has be taken in such huge doses and I just couldn’t tolerate it.
My first HRT at 44 was Femseven and while it was ok, I didn’t really get on with the levonorgestrel (the progestin) in it .
Changed to Femoston and it was absolutely briliant. Been on it for years. No bleeding, no reactivation of old endometriosis deposits (which I have a lot of).
I am currently on Evorel 50 patch with Provera as the progestogen. ( also took Provera for years pre meno to manage the endo). Only reason I switched is that Femoston only comes in a low dose and I would like to try and increase my estrogen a little for bone health etc now. It’s also only now, many years post meno that I’m confident that I can take this much estrogen without reactivating any old endo. Like you, I can feel straight away when old symptoms start up again. A 50mcg patch may well be too much estrogen for you if you feel symptoms starting up again.

The synthetic progestins get a bad rap and in my view unfairly. You only need to take a tiny dose compared to micronised progesterone and for those of us who need to keep womb linings very thin and not run the risk of reactivating endometriosis they are a safe and effiective way of doing it. I have found both dydrogesterone and medroxyprogesterone ((Provera) to be the best of the synthetic progestogens and I’ve been on them all in the past.  They are both derived from progesterone rather than Norethisterone and Levonorgestrel which are ‘androgenic’ and derived from testosterone.
I hope you find a regime that suits you . Good luck.

[joziel]

Thank you so much for the reply Floradora.  That is really useful info which I've saved to refer back to, should I need to change anything. It's interesting you mention the dydrogesterone as being a good choice because one suggestion from a gynae for me was Femoston Conti which I think is dydrogesterone. Are your endo symptoms okay with just that progesterone, no extra needed?

I'm having an adventure and a half, here.    Here's my update.... would be interested in your thoughts!! I put the significant bits in bold...

So, the ovary-firing pains subsided after a few weeks (I don't think those were endo, my ovaries were clear at the lap too) - but the old familiar endo-pains and twinges were still happening and I worried things would get worse if left untreated for years. (This was on 100mg continuous utrogestan, 50 Estradot patch and testosterone.) So I did what another gynae had suggested to me and I started Cerazette back up again, as well as everything else. It's been less than a week and the twinges and endo stuff feels much better already and I think will go away totally again...  So that's good - although I'm on quite a complex regime of stuff now, with Estradot patches 2x weekly, utrogestan every night, Cerazette and Testagel every morning.

The doctor I saw did do the blood tests for me. My FAI for testosterone was good at 3%. But my estrogen was low still at only 233nmol. And I think it's supposed to be at least 250nmol for bone protection. I did still have some joint pains left, as a symptom, and the constipation, plus palpitations, and the Newson doctor had said to increase every 4-6 weeks up to 100 if I still had symptoms. I'd been on the 50 patch about 7 weeks by then (and 25 patch 2 weeks before that) and my own ovaries had (supposedly!) been functioning for about 9 weeks and able to contribute some estrogen (as I'd been off Cerazette that long) - and they would only get suppressed again by re-starting Cerazette. So I increased my patch to 75. I felt confident to do that as I'd started the Cerazette....

That was just last Friday. The endo is still good and I think I'm going to be okay with that. My constipation has got a lot better on this higher estrogen dose and my metabolism has too, all my gut symptoms are gone  HOORAH. It's a bit early to know if it's helping the joint pain yet. So - everything is going great now.... EXCEPT....

I'm having weird blood pressure and palpitation issues, especially in the evenings and at night. These are really freaking me out and making me anxious, which doesn't help. (I am going to do a separate post about this.) Palpitations were one of my symptoms before going on HRT and I'm still dealing with them, off and on. I really haven't tracked them very well because at first I wasn't bothered by them as I'd read so much online from other women and how they were just another menopause symptom so they didn't really concern me. But I've now learnt that I seem to have higher blood pressure in the evenings alongside this - it can be around 144/79 on my home blood pressure monitor. When usually in the day, I'm perfect at 120/80, or lower. At night, I can lie in bed and feel like my entire body is throbbing sometimes - it can actually seem like the bed itself is moving.

(Funny story: The first couple of times this happened, I thought it was my husband scratching himself. But it went on and on and on and didn't stop, in this rhythmic way.  So then I wondered if he was, um, doing something else to himself in the bed next to me    - So I sat up really fast, to see..... and he was fast asleep  at which point I finally realised that this thing that was moving the bed, was.... ME!!! DOH!! It feels like all my veins are pulsing and throbbing to the point that there's a little rocking sensation. It doesn't happen every night but sometimes.)

I registered at a new GP practice last week (in my final attempt to find a menopause-knowledgeable local GP rather than relying on video consults with clinics far away!) and as part of the regular intake thing, they took my blood pressure. The doc wasn't the menopause doc I want to see, just another more junior doctor. She said it was a little high, at 144/82 or something, but that since I am slim and work out 4x a week, she thought it was just white coat syndrome - but she still asked me to do a week of blood pressure readings twice a day at home. So I've been doing that. If I take the evening reading around 5pm, it's still low at 120 but if I take it at 8pm or later, it is often up to 135-144. I also get the 'irregular pulse' icon on the blood pressure monitor sometimes. I can tell this is related to the palpitations and the fluttering feelings because it's all happening around the same time in the evenings. (By the way, all this taking blood pressure readings is really shit for anxiety. The feeling of the thing tightening on my arm is scary and knowing that I have to go do a test in a couple of hours and the suspense over whether it will be a high result or not.... I just hate doing this.)

This all happened before the increase in estrogen to 75, it was all happening already at 50. But it could for sure be due to fluctuations in hormones. I'm coming up to 10 weeks after starting HRT at the moment and I guess I've made a lot of changes.

I'm also wondering if the testosterone could be causing these issues. I don't know if I should stop that for a few weeks.

Anyway, overall it seems like I fix one problem and get another at the moment. I don't want them to make me stop HRT because of the blood pressure thing  but I also don't want to take beta blockers or meds when I know it will all stop without the estrogen. Am I just worrying, should I just give it longer?! I would drop the patch back down to 50 except the 75 has fixed all my gut issues and I think the joint pain is better and the estrogen result was on the low side.... arrggg

[Floradora]

Hi Joziel. Yes Femoston conti contains dydrogesterone and I was very happily on that for years with no flare up of endo symptoms. May be worth a go x

[joziel]

Thanks! I will talk to my doctor(s) about it!

[joziel]

Floradora, I just wanted to ask you about a couple things you said...

"Utrogesten while being the ‘natural ‘ progesterone was absolutely useless for me in managing bleeding, suppressing endometriosis growths etc. the main problem is that for any effect it has be taken in such huge doses and I just couldn’t tolerate it. "

What happened for you when you increased it and what did you try increasing it to? I'm guessing at least 200mg a night, but did you go beyond that?

I guess I'm wondering if that's something I could at least try in the future. To stop the Cerazette and try increasing the utrogestan to 200mg/nightly. I'm keen to stay on the body identical stuff if I can, but of course if it doesn't work out for me I will have to try other ideas. I just today have a migraine/headache back - which Cerazette causes me. (I haven't had any for the whole 9 weeks I've been off Cerazette and on only HRT and now I started Cerazette a week ago, I have a migraine coming on.)

Also, with your Femoston... Did you investigate the option of increasing your estrogen by adding in a squirt of gel? Alongside the Femoston? I know some doctors are fine with the idea of doing this and others are concerned there might not be enough progesterone but I'd think one squirt should be fine(!).

I've had Femoston recommended a couple of times now but there is this stuff you hear about increased clot risk with oral estrogen (especially as we get older) and something about oral estrogen binding to SHBG which in turn affects testosterone or something (that bit might be slightly garbled). Anyway, there seems to be a big push to have transdermal if we can. (Can we not just have an estrogen patch and dydrogesterone orally...!?)

On the other hand, I feel like my gut might prefer oral estrogen. Did you notice any difference there between patches and pills? I'm v prone to constipation caused by progesterone (and eased by more estrogen). The body identical progesterone is for sure causing this for me at the moment. And if I took oral estrogen, more of it might reach my gut to stimulate it?? I'm just hypothesising here...

[Floradora]

Hi Joziel. In the past I tried 200mg of Utrogesten daily but this didn’t control bleeding. I felt absolutely terrible on it no never attempted to go any higher.
The increased clot risk with oral estrogen is a tiny increased risk on top of what is already a very low risk. Unless you have other risk factors for a clot then it’s basically negligible.  The increased risk factors for a clot mainly related to studies done on the old style HRT comprising conjugated equine estrogens rather than 17 beta estradiol which is body identical and that is what is in Femoston.
Dydrogesterone is unfortunately not available in this country as a stand alone progestin only as part of Femoston. It used to be available in the past as a product called Duphaston. Many of us wish this product would come back as usual could then take it with say a patch or estrogel.
Dydrogesterone is not available as part of a combined transdermal patch. Personally I would rather take oral Femoston with its ‘kinder’ progestin of dydrogesterone than say Evorel conti patc( which uses Norethisterone as the progestin.
My GP wouldn’t allow me to increase estrogen by adding a squirt of gel as she was worried that the progestogen dose wouldn’t then be enough. That’s why I have changed to a 50mcg patch together with Provera. If you are seeing a menopause specialist or gynecologist they might allow you to do this. X

[joziel]

Thanks that is very useful. I didn't have any bleeding problems even with the 100mg of utrogestan, I wasn't bleeding. My pains are weird twinges throughout my cycle - off my left hip, off the left of my pubic bone and just below my navel to the left. That's what started to come back.

That is all really useful. Maybe I will skip trying 200mg utrogestan then. 

[Tulip123]

Thanks Joziel for continuing this post as it has been useful for me.

I had bad periods and was put on the combined pill at age 15. I took it with no break, no pregnancies and no problems until age 46 (last yr) when I started getting peri menopause systems. The doctor then told me to come off this pill.

For the past year, I have been on Evorel 50 & Utrogestan 200mg for 2 weeks (later changed to 100mg for days 1-25) as I gradually started bleeding more and more often.

Since stopping the combined pill, I have also been getting bad period pain which is now every day and is ruining my life.

Last week the hospital found a polyp on my scan. It is going to be removed on 2nd Nov and we're doing a biopsy. They said I may also need a laparoscopy.

In the meantime the hospital gave me the POP minipill to give me more progesterone. After 5 days of being on it, I've had no bleeds (hurray) but the pain is the same. I think I need more time though.

There is therefore a chance I have had endometriosis all these yrs since age 15 and that my combined pill worked well to stop it.

I am worrying in case the pain never goes. They've put me down as urgent so I'm being seen very quickly.