Perimenopause treatment options?

[purplegrapea]

Does anyone have experience of managing perimenopause as an endo woman? My excision surgery last year removed my endo and the pain has stopped, but my GP and other health professionals can’t seem to decide what to do to reduce my perimenopause symptoms.

[Brambledoggy]

Are you able to read my posts on this? I’m 48 and really struggling with both endo and peri menopause symptoms. See if you can click on my profile and read them. Otherwise we can DM each other.

[Brambledoggy]

Hmmm....

The thing is it’s really tricky to stick to exercise routines, yoga classes, country walks, blah blah blah, all the things you need to do, when your insides feel like barbed wire, your super plus tampon drops straight out after half an hour and you have debilitating chronic fatigue. We just have to do the best we can and not beat ourselves up too much. We’re beaten up already!

I’m toying with HRT for peri menopause symptoms (I have many) but need to sort out my endometriosis first (with deep excision surgery) and TBH I don’t feel there’s been enough medical research done to allow us to weigh up the long term risks, if any, that might be associated with HRT and endometriosis and how the two will play out down the line. It’s different for non-endo ladies. IMO. We all know that oestrogen feeds endometriosis so that worries me because the last thing I need is more endo flare ups and pain.

I know progesterone balances this out but it’s so flipping confusing for us endo ladies going through peri menopause. I’ve seen several menopause specialists but can’t yet be totally convinced by HRT, Mirena coils, Prostap etc etc etc because the side effects of hormone treatments can also be horrendous. I’m very wary of the pharmaceutical industry too. I think we all should be. So. Can’t seem to find the right answers. Anyone else feel like this? Just going to list my peri menopause symptoms for ease. Because we all unfortunately know the endometriosis symptoms all too well. 👹👺👹

Palpitations, rapid heart beat

Acute breathlessness. Just can’t get that fourth breath sucked in.

Weight gain, around my middle. Don’t recognise myself. Bikini days over.

Insomnia, chronic. Can’t remember the last time I got a full 8 hours.

Anxiety, I’ve never had at all in my life till last couple of years. I’ve even had a couple of panic attacks. Heathrow airport. Boyfriend just stared at me.

Dizziness.

Forgetfulness, what’s the symbol with three sides called again??!! oh yes...a triangle....stuff like that. Dates, birthdays, days of the week....impossible.

Lack of confidence

Zero sexual appetite. ZERO.

Hair thinning

Occasional deep cyst acne which can really knock you for six when you wake in the morning with it waving hello in the mirror.....and they can last for weeks.

Strange body aches

Strange allergies

Periods that are even heavier than normal and excruciating and an increasingly irregular cycle. Planning holidays nigh on impossible. Long haul flights messy and terrifying.

I could go on!

I know there will be many out there on hormones therapies. I was on the pill myself for many years to suppress endo. But now I’m older and wiser, I want to live longer! And I just feel so failed by my body, the medics, the surgeons. So. Eating healthy. Not so much booze. Organic. Vegetarian diet. Red meat, rarely and then only organic.

OUR SUPERMARKET MEAT AND MILK IS PUMPED FULL OF HORMONES AND THEN WE DRINK, COOK AND EAT IT!!!!!!!!

Why should I have to pay £12 flipping quid to eat a chicken that’s hormone free??? Grrrrrrrrr......anyway.....

It’s good to be able to nourish my body with the right kind of super healthy eating, cooking from scratch, ingesting oils, nuts, fruit, seeds, blimey, I’m like a flipping rabbit ....just without the hop!

I do sometimes wonder what it’s all for!!! Comments more than welcome.

🙂

[purplegrapea in reply to Brambledoggy]

I totally sympathise with a number of your menopausal symptoms! Interesting to hear your challenges with actually gaining agreement on what hormonal treatment might be effective. As far as I can tell (and I am confused), I need higher oestrogen levels to reduce a fair few symptoms, but with my age (40) and the history of endo there doesn’t seem to be much research out there on what could work.

After several failed attempts at GPs making a decision I’ve written to my local endo centre to ask advice. After excision on my bowel and uterine ligaments last year I don’t get any cyclical pain, but I do wonder if the early onset of perimenopause could have brought on my endo pain later in life.

Right now, the fatigue and 0 sex drive is what is dragging me down. My GP suggested sleeping tablets and anti depressants. But I’m not depressed, I am just freaking tired, angry and frustrated. And I have a history of bowel issues from antidepressants that I’m not keen to repeat!

What’s your current situation with getting excision surgery? Have you had ops before?

[Brambledoggy in reply to purplegrapea]

Are you able to click on my profile picture and read my journey? I’ve been through it ALL over the years. I have read (and I read a lot!!) that endo symptoms can worsen with the onset of peri-menopause and eventually menopause, due to fluctuations in hormone levels. I thought naively that things would maybe just sort themselves out naturally, but since I came off the pill a few years ago, things have got worse. I’ve just had my head stuck in the sand because the thought of another op is not nice. It’s hard to know what to do for the best. I thought my endo might go away and decrease and lesson as I got older and oestrogen levels dropped but my gut instincts say it’s spreading. I don’t understand how and why giving a lady with endometriosis EXTRA oestrogen can help. I’m not doing anything till I know. I’ll put up with the pain and I DO find that eating a mega healthy diet does dampen down my pain. I’m glad to hear yours stopped with your surgery, that’s slightly reassuring but I don’t know how severe yours was. The menopause specialist I saw last month gave me over a dozen options, some of them anti depressants too. Get lost!!! I’m not pumping my body full of hormones and chemicals again. Being on the pill was enough. There are no definitive answers for us I conclude. If you find any, let me know!

[Brambledoggy in reply to purplegrapea]

You might find this is interesting. From Harvard Medical in the USA

Perimenopause and menopause

Fluctuating hormone levels during perimenopause (the years leading up to menopause) can cause erratic periods and heavier-than-usual flow. Some women with endometriosis who suffer gut-wrenching pain during menstruation may benefit from eliminating their periods altogether through the use of continuous low-dose birth control pills. Others take birth control pills for three months followed by a week off, so they have a period only four times a year.

Another option is an intrauterine device called Mirena that releases levonorgestrel (a progestin) and has been shown in a few small studies to ease menstrual cramps. The Mirena device can be left in place for up to five years. Periods eventually become lighter and may disappear completely after one year.

Estrogen fuels the growth of endometriosis lesions, so in theory, dwindling estrogen levels at menopause should lessen the symptoms. But even after periods have ceased, the ovaries continue to produce small amounts of the hormone, so endometriosis may continue to cause trouble.

Women bothered by menopausal symptoms such as hot flashes and night sweats are often concerned that taking hormone therapy to quell them could reactivate any previous endometriosis. To reduce this possibility, many clinicians recommend using hormone preparations such as Estrace, Vivelle, Climara, or Estraderm patches and micronized progesterone (Prometrium and Crinone vaginal gel) rather than synthetic or animal-derived hormones (such as Premarin and Provera).

[purplegrapea in reply to Brambledoggy]

Thanks very much, that is interesting. I have briefly read the following that you might find interesting if you want to look at non hormonal treatment. ncbi.nlm.nih.gov/pmc/articl...

It's a collective review of a number studies into menopausal treatments.

[Brambledoggy in reply to purplegrapea]

Thanks, I’ll read in bed later. It’s so flipping hard to know what to do. I’ve done acupuncture and she said I had an incredibly high pain threshold and couldn’t work me out. She had 20 years experience! Of course every woman goes through menopause. Nothing we can do about that hey?! BUT...what does frustrate me massively is all these celebs going on HRT and feeling wonderful, got their life back again....blah blah blah, but if you’ve suffered with endo all your life, it’s not a simple decision and shouldn’t be taken lightly. There’s NO way I’m taking any oestrogen if it’s going to flare up my endo and make it worse. I literally climb the bedroom walls for a day when I get my period. The GP gave me liquid morphine which doesn’t touch the pain, but does make me drowsy. My boyfriend gets so scared when he sees me writhing round in agony. Thankfully that’s only for 1 day, the rest of the time I can endure the pain. But I’ve recently started getting shooting pains up my vagina, and it aches all the way up like my endo is somewhere near my urethra or nearby. It’s like a knitting needle being shoved up there (sorry) 😔 sex, forget it, tired, yes sometimes I can whizz around, others barely make it out of bed. Hard to differentiate the endo from the peri-menopause.

[purplegrapea in reply to Brambledoggy]

I'm so sorry, I hope that you can get the surgery you're desperate for very soon. The main thing I remember being surprised from in the article is a suggestion to try hypnosis for a number of symptoms which is fascinating!

[Brambledoggy in reply to purplegrapea]

Hmm, interesting....

Can they look into my eyes, put me under for an hour and make me think I’m Helena Christensen then??!!

“3,2,1, you’re back in the room and you have the life of a supermodel”....failing that send me to the Maldives for a fortnight!!!

🤣🤣🤣

[Star-girl in reply to purplegrapea]

Perhaps you could give Neals Yard a call and try homeopathy. I’ve just started a course and it seems to be helping with some of the pain and anxiety and hormones and excema/hives. I put off ringing them for months, but wish I’d done it sooner. It’s not a magic wand but there is definitely a shift within a week of starting the course.

Best wishes x

[purplegrapea in reply to Star-girl]

Thanks for the suggestion, I shall take a look. I’m looking into alternative treatments too.

[Brambledoggy in reply to purplegrapea]

Found this on the menopause matters website today, thought you might find it of interest too. Nina.

Endometriosis

There is a small risk of reactivation of endometriosis with HRT use and any recurrence of symptoms should be reported. If a hysterectomy has been performed for endometriosis, the choice of HRT use thereafter should be influenced by the extent of endometriosis at the time of the operation. Since hysterectomy often causes a premature menopause, it is often advised to take HRT until the average age of the menopause; 51 years. HRT after hysterectomy usually consists of estrogen only. However, in the presence of endometriosis, estrogen may cause stimulation of residual deposits and consideration should be given to using continuous combined (estrogen plus daily progestogen) therapy, or tibolone, though little research has been done on the effect of different types and duration of therapy. Medical treatment of endometriosis often involves ovarian suppression which, along with ovarian removal, may increase the risk of osteoporosis.

[purplegrapea in reply to Brambledoggy]

Thanks very much, that is interesting! I'll let you know if I get anything solid back from the nurse specialist at the endo centre I emailed.

[Anastasia17 in reply to Brambledoggy]

Hi Brambledoggy. Like you I am copin solo with a variety of symptoms. I was advised by a lady and I am currently using it, that the following concoction reduces/eliminates in some cases the night sweats :take half a teaspoon each of turmeric, ginger, cinnamon, mix with a bit of olive oil to make a paste and swallow it. The taste is not great. The turmeric is to reduce inflammation, ginger to give energy and the cinnamon balances sugar levels. It's worth trying, it has worked for me. 😊

[Anastasia17]

Sorry for the delay, I was researching this exact topic when I have found your post.

Thank you for posting about these 2 conditions. I must have been both perimenopause and endo for the past 10 years. Due to a uterine malformation, I thought, like everyone else that heavy periods, pains, night sweats, tiredness was due to this malformation.

I have been informed at 51 that I have endo in January following a laparoscopy that took place in September last year. No treatment received since. No explanation, no nothing. The Pain Clinic doesn't know what to do with me as I react to all medications. The Gp blocked/ delayed the referral to mental health specialist that, by the time I saw her, declared that I didn't need treatment. 8 months wasted waiting for help. I have been through a lot of pain, depression, it's been tough.

I have coped solo with realising, researching, understanding this disease.

This site has been my life saver because I felt so confused.

I have since developed a reaction to certain foods via my bowels, so I have followed the advice of other ladies who kindly shared their stories, tips and I am now on a stric diet, gluten dairy, soya, chocolate, caffeine free, no tomato puree due to repeated cystitis, no dry beans.

The GP's reaction when I told him I had been diagnosed with endo, in February 2019, was: as you are reaching the menopause, there is nothing to be done. The nurse repeated the same, but added that for interstitial cystitis, nothing can done and for the perimenopause as I have a history of breast cancer, very little can be done. This is the medical support that I have received.

Effectively, they are washing their hands out of a complicated patient like me.

So, myself, my very supportive husband and our sons, we are coping. It is scary for my husband as well

I also do realise that the endo doesn't stop with the menopause, above all when it's located on the bowels.

Reminiscing about my grandmother of whom I loved a lot, I remember her being very particular about her food.... now I understand why.

I find anxiety a big problem.

My change of personality an even bigger problem. I have lost my joie de vivre.

Have you heard of the website 'Anxiety Uk' ? You pay £40 and it gives access to counsellors. I am unsure, of 2 minds about it at the moment, thinking about it.

Waking up between 2am and 5am is tough.

It would be nice to exchange notes and experience.

[purplegrapea in reply to Anastasia17]

I'm sorry it's taken me a while to reply and for your experience. I feel like when you hit menopause (peri or full) we just become too complex for the system/research.

I do have some food issues, and find too much dairy hurts my tummy.

The past couple of months I've been working with a medical herbalist who feels that a lot of my own symptoms are due to an inflamed system. Reducing that inflammation will better help it handle the hormone fluctuations from perimenopause.

I'm taking herbs that are anti inflammatory and also generally help reduce anxiety. I can feel some difference, but the biggest change I've made it cutting almost all carbs and sugars from my diet. This isn't going gluten free but properly cutting carbs that turn into sugars. These spike blood sugar levels and then cause you to create insulin which at large volumes inflames your system (and becomes fat!)

It's taking time and I've not explained it particular well, but the sleeplessness is now really my only issue. I'm still warmer than I used to be, but my moods are really only now affected by sleeplessness and how I handle difficult situations. We're also using CBT to help with anxiety.

Did you decide to try the course?

[Anastasia17]

Thank you so much for your kind reply. No I didn't try the course because, unless a counsellor is trained about endo, I could get misdiagnosed as with hormones either spiking or dropping, it creates extreme mood swings that an untrained counsellor would not understand, so £40 down the drain and a lot of frustration. I think I was in a lot of pain due to inflammation exacerbating endo symptoms, so 2 to 3 different types of pain at the same time. Since May following excellent advice from kind endo warriors on this site, I have put myself on a gluten, dairy, soya dry beans, caffeine, chocolate, brown rice free diet as I also have IBS symptoms with endo and also tomato purée and hot spices free to avoid, manage cystitis that I have had for the past 10 years and treated repeatedly by GPs with antibiotics that gave me secondary infection that, unfortunately, I also passed to my husband. So embarrassing! And Ashamed. The diet is what has helped me the most. It doesn't eliminate flare ups, but it reduces the pain, I still get IBS like symptoms under the influence of hormones, my tummy still swells but the pain is less acute. My husband has been absolutely fabulous, soooo much better than these so-called qualified GPs, as he makes sure that my diet is incorporated in the family meals, ie when we cook spag. Bolognese, I have gluten free spaghettis but my meal is the same as everyone else. I didn't go vegetarian due to strong anaemia for most of my life. My family hasn't changed drastically their meals, I adap my meals to the family meals. It also removes the stigma of feeling different, isolated from everyone else that can increase the feeling of depression. I take my gluten free cakes, biscuits and decaff coffee to work. I also take supplements such as magnesium glycenate, Vit. E, Vit D, B12, and Rhodiola to reduce anxiety /stress, this last one has been my lifesaver. I, with my husband, are managing the condition whilst waiting for treatment which, I hope, will give me my pain free, energy, joie de vivre back. How do you find your herbal treatment? What herbs have you been recommended? I also take a small concoction of 3 different spices to reduce /eliminate the night sweats that have plagued me for the past 10 years. Looking forward to hearing from you. x

[purplegrapea in reply to Anastasia17]

I'm afraid my herb mix is quite a few different herbs and tailored to me so I'm not sure I could recommend doses etc. But they do help regulate my temperature and reduce inflammation symptoms. Overall, I think I do get more benefit from the carb and sugar reductions, although I do find these hardest to stick to! I do know that when I eat/drink them I look pregnant within a couple of hours, I feel tired and my periods become more uncomfortable.

Have you found any benefit from the mix you've been taking?

[Anastasia17]

Yes, the mix works. I stopped it and have to go back on it from tonight. The taste is not great. They are kitchen cupboards ingredients. Half a teaspoon each of turmeric, ginger, cinnamon, mix it into a paste with olive oil and... Enjoy ! Make sure you have a glass of water prepared. I totally understand about the herbs mix. I cope well with the gluten free, I have reduced sugar but not cut down. I have mainly and only modified/removed the foods to which my body reacted to. The consequences were so obvious and painful that just the thought of being in pain is a deterrent enough. 💭

[purplegrapea in reply to Anastasia17]

Hi Anastasia17 , I wondered how you were getting on with your diet and supplement regime? I'm coming off my current herbal mixture as I couldn't sort out my sleep issues.

[Anastasia17]

Hi Purpplegrape99. Thank you for remembering me, its been a long time since we talked. I am sticking to my diet. It is not always easy. As I felt good today, but at the same time, also fed up with not being able to have a normal diet, I allowed myself to have a yoghurt made of mango putée, greek yoghourt covered by dark chocolate, hoping that maybe I could have it and there would be no reaction. Ahem! 1 hour later, everything came out with upper stomach burning pains. So I can forget my hope of being 'normal'. I tried normal bread beginning of last week and my tummy also reacted. So, yes, my diet works in terms of reducing the symptoms and the pain, but I am also sticking to it whilst I am waiting for surgery. I do not intend to carry on such a strict diet for the rest of my life. I carry on with my supplements, they help. I had to stop Vitamin B12 as the blood results were a bit too high 😊. They keep me going, so... If you stop your herbal treatment, what are you doing to help with your symptoms? Why are you stopping it?, if I may ask?

[purplegrapea in reply to Anastasia17]

I have similar food issues, you have my sympathies. For example, I absolutely love Greek yoghurt with nuts and fruit for breakfast, but it goes straight through me! I am trying out the Keto diet, which has reduced bloating issues and really encouraged me to think about food quality. I sometimes struggle to get the right amount of fats without using cow dairy products.

I’m taking a break from the herbs because it was all feeling very complex and I just couldn’t get to sleep, even with the reduction in flushes and slight reduction in my inflammation. I’m hoping I can do more with exercise and the diet, but will most likely be back on it again soon! I’m off to my GP today on another matter, but am thinking I should discuss hormonal treatment again. Basically, I just want decent sleep!

[Anastasia17]

Good morning. For the fat content, I still have a bit of butter, almond milk, cashew nuts and other nuts that have a high fat contents, gluten free cakes and biscuits. For the night sweats I take half a teaspoon each of :turmeric, cinnamon and ginger, I mix it into a paste with olive oil and swallow it, before going to bed. The taste is disgusting but it has made a difference. It is good to know about alternatives due to the shortages in hormonal treatment in the UK at present. I too am hoping for hormonal treatment in the next few months, but worried about the UK supply shortage. 🤔