Anybody had any improvement of pain symptoms from HRT?

[Maria1]

So my GP was convinced I had osteo-arthritis. Then when the x-rays have come back clear she’s wondering if It might be worth trying HRT, particularly as I’ve had a big increase in pain over last few years. She basically thinks menopause can be a big factor in some cases of ME/CFS.

I’m 54 and 4/5 years post menopause. I’m not keen on HRT. My mother died young of breast cancer and, although I am now persuaded there is no genetic risk factor, I’ve always been quite keen on letting your body’s hormones ride their natural course wherever possible.

GP thinks I’ve got nothing to lose by trying it- I don’t expect her to understand the whole ME/CFS stuff, risks of getting worse and so on, and I don’t really need her to to, she’s happy to let me make an informed decision.

I would find it very helpful to hear anybody else’s experiences of HRT.

 

[shak8]

(I'm not sure that I have ME/CFS per the most strict diagnostic criteria,) But I certainly have fibromyalgia and that started at age 45 and I was certainly having early symptoms of perimenopause by age 46. I did take some HRT combo to get me through that turbulent period.

HRT did nothing for my pain levels when I saw a rheumatologist who suggested going on it when I was already 53 and menopaused. I tried it but I just felt bloated.

My RN gut feeling is this: you can try it for a limited time, keep a diary before you start it and after you take it to see if it really makes a noticeable difference.

Ask your doc what is the mechanism, or the theory behind her advice? What types of pain do you experience? Is there a safer drug than HRT for that pain?


I would research the risks of HRT on uterine cancer if you take it for a long time. I don't remember the risks for breast cancer, but I would research those.

cancer.org might be of use.

 

[Milo]

I am not sure what is the link between osteoarthritis and menopause and then menopause being linked to ME. Did you mean osteoporosis being linked to menopause?

As for HRT, that’s a loaded question. I am coming ‘of age’, and wondering whether it is something i would need for my estrogen and progesterone-related problems, such as amplified and prolonged PMS symptoms and hot flashes. My own decision would depend on the intensity and duration of these symptoms.

HRT can increase risk of breast cancer and it is something i would discuss with my physician myself if HRT were needed or suggested. I also have family history of both breast and ovarian cancer. Paying attention to the recommended cancer screening in the time of changing hormones is important.

Sorry i can’t be of much help.

 

[oldtimer]

(Very gradual onset ME for around 50 years, mild for the first 30 years but always getting gradually worse with no remissions. Also supposedly fibromyalgia, and significant widespread joint deterioration which also started 50 years ago.)

I've been using a low dose HRT patch for almost 20 years. I've tapered off a couple of times (reducing very gradually to nil over 3 month periods) but find the eventual return of hot flushes and extraordinary anxiety intolerable.

For me, HRT does nothing to ameliorate any kind of pain, cognitive function or anything ME-related.

 

[TigerLilea]

GP thinks I’ve got nothing to lose by trying it- I don’t expect her to understand the whole ME/CFS stuff, risks of getting worse and so on, and I don’t really need her to to, she’s happy to let me make an informed decision.

I would find it very helpful to hear anybody else’s experiences of HRT.

My GP doesn't agree with your GP. I was told that once a woman is five years post menopausal, it is no longer safe to start using HRT as your risk of developing cancer becomes much higher than if you start taking HRT during perimenopause or at the beginning of menopause.

 

[Rain]

Please consult someone who really knows HRT. There is so much misinformation out there, both amongst patients and doc’s. A lot of it because modern body identical hormones are something quite different from earlier types of medications.

Edit: I have had two gyno’s and one endo (the latter an osteoporosis specialist) tell me this. I found it more relevant to link to a public quote rather than referring to my conversations. Thus the rest of the post. /end of edit

I don’t know if London Hormone Clinic (private) is an option for you, but I have learned a lot just from their Social Media (particularly when they appear in Q&A sessions on other peoples channels).

 

[Milo]

Please consult someone who really knows HRT. There is so much misinformation out there, both amongst patients and doc’s. A lot of it because modern body identical hormones are something quite different from earlier types of medications.

I don’t know if London Hormone Clinic (private) is an option for you, but I have learned a lot just from their Social Media (particularly when they appear in Q&A sessions on other peoples channels).

Please share science, reliable sources, peer reviewed, not private clinics. Here is a large epidemiology study regarding HRT and breast cancer but I am sure there are others. https://cebp.aacrjournals.org/content/29/7/1341.long

The topic of breast cancer and all cancers in general benefits from systematic reviews as well, because so much well funded, high quality research is being done.

 

[oldtimer]

The Jean Hales Foundation is a highly respected resource in Australia. It conducts courses for doctors and so on, and collaborates with research teams in universities and hospitals.There's info about everything you could want to know on the website.

Re breast cancer: “In terms of general advice about the risk of breast cancer associated with hormone use, although this in itself is a complicated issue, depending on hormone therapy type and other factors, the general consensus is that there is a slight increase in breast cancer risk associated with combined oestrogen and progestogen hormone therapy after five years of use.

The extra challenge with hormone therapy provided by increasing age include a general tendency for arteries to 'stiffen' and this is associated with an increase heart disease and stroke risk, and this will be a consideration for women who are using hormone therapy beyond the age of 60 years, or within 10 years of the menopause. The risk for venous clots (DVT) also increases with age.

If hormone therapy use is to continue past this age, it would be advisable to reduce to the lowest dose necessary for symptom control, and if possible to use a non-oral approach (such as a skin patch or gel), which avoids the liver having to process the hormones.” https://www.jeanhailes.org.au/news/taking-hrt-post-60-ask-dr-jean

For a list of risks, contraindication etc. etc. see the link below.

Interestingly, it lists one of the five symptoms relieved by HRT as joint pain and stiffness. https://www.jeanhailes.org.au/health-a-z/menopause/menopause-management#complementary-therapies-mht

 

[Milo]

The Jean Hales Foundation is a highly respected resource in Australia. It conducts courses for doctors and so on, and collaborates with research teams in universities and hospitals.There's info about everything you could want to know on the website.

Re breast cancer: “In terms of general advice about the risk of breast cancer associated with hormone use, although this in itself is a complicated issue, depending on hormone therapy type and other factors, the general consensus is that there is a slight increase in breast cancer risk associated with combined oestrogen and progestogen hormone therapy after five years of use.

The extra challenge with hormone therapy provided by increasing age include a general tendency for arteries to 'stiffen' and this is associated with an increase heart disease and stroke risk, and this will be a consideration for women who are using hormone therapy beyond the age of 60 years, or within 10 years of the menopause. The risk for venous clots (DVT) also increases with age.

If hormone therapy use is to continue past this age, it would be advisable to reduce to the lowest dose necessary for symptom control, and if possible to use a non-oral approach (such as a skin patch or gel), which avoids the liver having to process the hormones.”

For a list of risks, contraindication etc. etc. see the link below

Interestingly, it lists one of the five symptoms relieved by HRT as joint pain and stiffness. https://www.jeanhailes.org.au/health-a-z/menopause/menopause-management#complementary-therapies-mht

The paper I quoted above mentions the increased risk of breast cancer beyond 5 years of HRT.

As general rule for me, private clinics in a context of socialized health care systems need to be closely scrutinized in regards to what side of the science they stand, whether they're in it for the concierge service (money) or for the right reason. Countries that offer universal health care systems are constantly reviewing the best practices especially in the field of oncology but there are other fields as well (HIV, rheumatoid arthritis, Parkinson's disease come to mind)- paying for private services may give you other options for off-label and experimental drugs or alternative therapies, but in general these have not received the science stamp of approval from the country's regulating body, therefore is not funded for one reason or another. In our field, what comes to mind is stem cell treatments, methylation protocols, ozone treatments, and Rituximab, Apipriazole, but there are others.

 

[oldtimer]

Yes, because of my ignorance about things medical, I have no choice but to be mistrustful of everything and everyone. Therefore people like me effectively end up taking calculated risks.
I've had a bilateral mastectomy so fortunately breast cancer is one less health threat to worry about in the context of HRT.
Sometimes it's a matter of choosing between the lesser of two evils. I would like not to have to use HRT but it's either that or a quick slug of nembutal .

 

[Kitty]

I wasn't allowed to take HRT because of a family history of breast cancer after using hormonal contraceptives, but going through a pretty hideous natural menopause made no difference to my ME pain levels. It was roughly the same before, during, and after.

My menstrual cycle didn't make a difference to pain levels either (the increased symptoms I got were the "immune" type, rather than pain), but I wonder if the effect it had on you might be a hint as to whether your increased pain is related to hormonal changes? Obviously we're all different, and the fluctuations might have more of an effect on pain levels for some women.

 

[Milo]

Sometimes it's a matter of choosing between the lesser of two evils

I agree with you here. It is a calculated decision and a choice that patients make along with a physician that has knowledge and experience in the matter. I do not believe there is a cookie cutter answer for everyone. Many variables need considered.

This menopause thing seems like a bad deal all around, from my point of view. It feels like getting fired, being on fire, getting kicked in the butt, sucker punched, all the while getting further foggy, gaining weight, and getting labelled as ‘just another middle age woman with hysteria’

 

[TigerLilea]

but I wonder if the effect it had on you might be a hint as to whether your increased pain is related to hormonal changes? Obviously we're all different, and the fluctuations might have more of an effect on pain levels for some women.

I had very little pain before menopause. It was only after meno that I started getting arthritis pain, back pain from digging my garden, and feeling aches and pains throughout my body. It sucks getting older.

 

[Maria1]

Thank you all for your replies. Forgive me for not replying or quoting in my reply here- I’m just not up to it cognitively.

Some things to clarify:-

My GP didn’t think the suspected osteoarthritis was linked to menopause. I had a telephone appointment regarding specific pain in my left hand. When I described it she thought it was osteoarthritis so referred me for X rays;

My mother’s early death from breast cancer meant I was monitored by a breast cancer specialist through my forties with annual mammograms and check ups. I was also referred to genetics where they mapped family history to see what the risk was. The monitoring stopped at fifty when I just went back into the normal system of over fifties monitoring. My consultant explained that, if I hadn’t got breast cancer by the age of 50, the probability of my getting it is now no higher.

I am looking at the risks quite carefully. What I need to think about is the possible benefits for me and, as others have said, that’s a very individual decision.

I did see a specialist in Leeds a few years ago, a woman who’s quite well known in her field. I can’t remember her name obviously! She didn’t push it but said, as my GP does, that it might be worth a try and that you need to try it for at least 3 months before you feel any benefit.

I’ll respond further later, I forget how draining I find posting on here.

Its incredibly helpful to hear your experiences though.

 

[dangermouse]

Hi @Maria1

I started a trial of HRT three months ago and I have not experienced any improvement of pain. In fact I’ve had horrendous increases in pain recently.

It improved insomnia and night sweats and dry skin which has been good.

I’ve had to pause it yesterday due to possible side effects and am waiting to speak with my GP.

I tend to be very sensitive to medication so it’s not a surprise.

 

[meg22]

Hi @Maria1

I'm 54, have only just entered the menopause and decided to start HRT a couple of months ago after trying other things without success. The last year or two I'd begun to get horrible new symptoms such as really dry, painful eyes, mood swings and being very irritable, together with a worsening of existing symptoms such as worse sleep and more pain, poorer concentration so that I could barely follow a TV programme and realised that I was totally underestimating the effect the menopause was having on me. What has taken me by surprise is all the other symptoms, particularly the eye symptoms - hot flushes were the least of it.

It's early days for me - I'm still experimenting slightly as to dose and the best way to take it and I think I would need to be on it 6 months - a year to really judge it's effects but I have already noticed improvements. My eyes are much better for example and I think pain overall is better as well, as is concentration and sleep. I used to get a noticeable worsening of pain, particularly joint pain pre-menstrually and during menstruation. My ME symptoms were also previously better during the second week of my cycle when oestrogen levels were higher.

I knew from past experience that I am really sensitive to sex hormones and was only willing to try 'body identical forms' particularly of progesterone - the only one that is licensed for use in the menopause in the UK being Utrogestan capsules. Not all doctors will prescribe this and it's not available everywhere in the UK so I thought I might have to go private but I was fairly lucky as this was what my GP suggested although she's given me a different oestrogen to the one I wanted but still transdermal, Lenzetto spray rather Oestrogel. I didn't bother asking my GP what effect HRT would have on my ME as I knew she would be clueless and in any case felt that I'd only know by trying it.

I found this website really helpful in trying to make decisions: Home | My Menopause Doctor Louise Newson
There's also this one: Menopause Support and Advice from The Menopause Charity

 

[Mij]

My GP told me that women who have experienced hot flashes and other symptoms of menopause had a 50% lower risk of developing the most common forms of breast cancer compared with postmenopausal women who had never had such symptoms in a study.

Abstract here

I've been in menopause for almost 6 years. My hot flashes and nights sweats still occur but are diminishing slowly. So are the mood swings. I don't experience pain and never took HRT.

 

[TigerLilea]

My GP told me that women who have experienced hot flashes and other symptoms of menopause had a 50% lower risk of developing the most common forms of breast cancer compared with postmenopausal women who had never had such symptoms in a study.

That wasn't the case for me. I experienced hot flashes and other symptoms of menopause but I still ended up with breast cancer.

 

[dangermouse]

Just to update: I presented with TIA symptoms at hospital (sent to a special unit that bypasses a&e thanks to my GP! I had told him I couldn’t tolerate hospital a&e environment as ME is bad).

Staff were really kind and nurses surprised by how bad ME can be.

Just a bit disappointing that I heard junior dr ask consultant if ME is chronic fatigue.

The CT scan was clear and no signs of stroke or damage. So, they concluded I’ve had severe migraine. I’ve never had a migraine that was so bad before.

Anyway, I’m okay to continue with HRT so that’s good news for me.

I’m on Oestrogel (transdermal as I get migraines) and Utrogestan (as less risks associated).

I looked on Dr Newson’s website and asked a menopause specialist nurse a few questions before I discussed with my GP.

Good luck with whatever you choose to do.

 

[Maria1]

Just to update: I presented with TIA symptoms at hospital (sent to a special unit that bypasses a&e thanks to my GP! I had told him I couldn’t tolerate hospital a&e environment as ME is bad).

Staff were really kind and nurses surprised by how bad ME can be.

Just a bit disappointing that I heard junior dr ask consultant if ME is chronic fatigue.

The CT scan was clear and no signs of stroke or damage. So, they concluded I’ve had severe migraine. I’ve never had a migraine that was so bad before.

Anyway, I’m okay to continue with HRT so that’s good news for me.

I’m on Oestrogel (transdermal as I get migraines) and Utrogestan (as less risks associated).

I looked on Dr Newson’s website and asked a menopause specialist nurse a few questions before I discussed with my GP.

Good luck with whatever you choose to do.

Glad you’re ok @dangermouse- that all sounds a bit scary!

I also get migraines and one of my concerns is that HRT will make them worse. I currently take topirimate which has its own problems but reduces the migraine frequency and intensity.

One difficult aspect of my own decision with HRT is that I’ve taken such a long time getting to a point where things are controlled to the extent that they are with the medications I take, and I don’t want to rock the boat. It’s not perfect but I don’t want to make anything worse and, with pacing, I can probably still get a fairly decent day, I’m just always too busy to pace, so end up in a permanent state of PEM.

It sounds as if you feel that the benefits from HRT are definitely outweighing the side effects in your case.