Severe menopause symptoms after hysterectomy & endo excision surgery.

[jen2023]

Hello everyone. I desperately need your advice and recommendations for menopause symptoms relief post hysterectomy and endometriosis excision surgery. I am 46 yrs old, never had children, had stage 4 endo, adenomyoisis and ovarian cysts, got a full hysterectomy, kept both ovaries, 3 months ago.

I was peri menopausal for a few years with manageable symptoms. However, the last 3 weeks, I am in living hell with sudden onset of severe menopause symptoms. Blood tests confirmed with post menopausal range of hormones (oestrogen and progesterone). Thyroid normal. Testosterone testing was refused by the government due to funding issue (funny how men are not refused, only women!).

My symptoms includes:

-Worst: Constant, 24-7 muscle aches and joint pain, especially in both arms. It is so bad that it wakes me up in the middle of the night and hard to fall asleep because of the pain.

-Sleep disturbance: wake up every few hours, always tired and lethargic as a result

-Night sweats, hot flushes

-Chronic fatigue, brain fog, mood swings, Irritability, depression, anxiety....

My GP is not helpful as he is inexperienced in menopause and told me to see a hormonal specialist or endocrinologist. It is a 3 months wait to see these specialist in Sydney, Australia. My gynaecologist who performed my surgery is more of a surgical specialist, not helpful in regards to hormones. He actually suggested HRT is not necessary for me given my recent hysterectomy.

I understand conventional HRT with oestrogen is not suitable for me, given my endo history and risk of triggering endo growth, despite hysterectomy.

Has anyone tried HRT without oestrogen? Bioidentical progesterone or testosterone? Progesterone cream? Hormonal treatment vs non hormonal treatment, or combination of both?

Any vitamin supplements specifically for menopause that was effective? Black cohosh was recommended, but could be harsh on the liver. Any phytoestrogenic food/supplements like soy can trigger endo growth?

So much conflicting or lack of info for women's menopause management with endo. There are lot more info for conventional menopausal treatment (for those without endo issues) that always pushes for estrogen.

I have tried:

-Over the counter pain meds are only temporary relief, bad for liver and sensitive stomach with frequent long term use.

-Acupuncture: not sure about effectiveness yet. Plus it is expensive for me as i don't have private health insurance.

-Increasing my vitamin supplements had slight improvement in pain levels at night:

Vitamin D, high dosage, 10 000 IU

Curcumin, Apigenin, magnesium high dosage, vitamin B,C, K, Myoinositol, probiotics & prebiotics, l theanine, GABA.

I will add cod liver oil, specific probiotics that helps with sleep (lacto gasseri and reuteri).

I am on a strict diet, no gluten, no sugar. Trying to eat more protein and fibre.

I try to exercise everyday, but it is not easy due to my chronic pain.

Thanks so much for reading my long post.

[Fred91]

hey Jen,

Sorry to hear your symptoms are like that! I’ve been put on the Progesterone pill and entering “menopause” right now so I get it! I’ve been recommended a few natural remedies and supplements if you want to try, and sorry if you listed them up already:

-diet: the level of fatty protein you eat does impact your hormones, so lower your meat intake if you do eat meat. I’ve been recommended a vegan diet post laparoscopy and it has worked well for me, so it might help you too. Though we are all different so it may not;

-mushrooms such Ashwaganda and Lions Main are a good sleepy helper and help control most brain functioning bits and gut health;

-cherries: especially acerola help with sleep at night;

You can also find some vitamins specifically for menopause, try to see brands like Feel they are pretty good!

but yes, diet change was a big factor for me!

I hope this helps

[Fred91 in reply to Fred91]

I should add, I haven’t taken sugar out because it actually helps me with sleep and energy levels throughout the day. Plus if you have had endo, you are probably anemic and getting sugar out of your diet may have caused some imbalance too!

Oh and Nettles and Dandelions are great for pain.

I should add there’s not much research done on women’s health in modern medicine, but Chinese and Homeopathic medicine do have a lot of actual evidence and help a lot, you just have to be willing to wait some time for results 😊

[jen2023 in reply to Fred91]

So glad you mentioned the teas! I bought Nettle and dandelion root tea recently so i should start brewing them regularly 😉Cutting out sugar and gluten (no more wheat bread 😂) has been good for me, although it is extremely tough as i have a sweet tooth. It got rid of sinus blockages, post natal drips and phlem issues i had lived with all my adult life. It wasn't my intented purpose, an added bonus for the dear loss of cakes and ice creams in my life.

[jen2023 in reply to Fred91]

Thanks so much for sharing your experiences and tips! I will definitely look into your diet and vitamins recommendations. The ones that helps with sleep looks promising 😀

May I ask about your progesterone pill? What type is it? is it a bioidentical ? No testosterone on top of the progesterone? Has it been effective for your menopausal symptoms?

[Fred91 in reply to jen2023]

Well, it’s Desestrogel, and the dosage is 75mg. The doctor said it will take up to a year for people with endo to fully stop periods, so mine haven’t fully stopped BUT I have 2 days periods now where I can normally live life and not worry about passing out.

I am not taking anything on top rather than vitamins such as the ones you mentioned above and some pre menopause ones. I try to do things with herbs rather than take processed supplements. If that makes sense.

Look, there’s a lot of things in nature that can help. Some things may work for you and some others might not, like vegan diet vs veggie or meat. You have to find what works for you I guess! I hope I’ve helped you a littl 😊

[jen2023 in reply to Fred91]

Thanks so much for your reply! It really helps and comforts me to know i am not doing this on my own. Sharing and learning new info and experiences definitely helps, so thank you!🙏💓Glad to hear this pill is helping you with your symptoms. Sounds like you did alot of research into finding the best solution for you. We become a pseudo experts in this right?

My gynae surgeon just got back to me and gave me a script for Tibolone (Livial), a combined HRT, with synthetic estrogen, progesterone and testosterone. He recommends this to many of his endo patients and had good feedback from them. He is a wonderful surgeon and doctor so I trust him. I am going to do some more research and try out this Hrt soon.

[Catskils]

Hi Jen

Sorry to hear you're having a difficult time.

I have similar history and surgery to you. Did you have endo excision at the same time?

9+ months after my hysterectomy/endo excision, I followed up about HRT due to similar symptoms. I had no signs of endo returning following an mri so they agreed to put me on estrogen only hrt (2 pumps oestrogel). Normally they want you to take with progesterone even post hysterectomy because of endo but because I'd managed fine post surgery they decided estrogen only, so it is possible even with an endo history. Although they did make me aware of risks of potential return of endo.

I also take a magnesium citrate supplement which includes Vit B and D. I've tried different types but settled on one by New Nordic that has massively helped my aches and pains.

I do still have bad brain fog and get fluctuating fatigue and mood so it's not perfect but lots of menopause symptoms have eased with hrt especially sleep and hot flushes. I am going to ask them to review giving me testosterone too to see if that helps.

It took about 6 months post hysterectomy for me to truly feel better and ease some of the fluctuating symptoms.

Sorry again it's so tough for you right now. I hope you are able to find a workable solution and get the right hormones etc. to support you.

[jen2023 in reply to Catskils]

Thanks very much for sharing your story and experiences with me! And for your kind words of validation and encouragement. It really helps to know I am not doing this on my own.I had both the hysterectomy and excision done at the same time:, bowel adhesion, ovarian cysts, lots of diseased parts on my pouch of Douglas.

So glad to hear you are clear of endo since your surgery! I think that is the biggest fear and concern for us battling this for so many years and multiple surgeries.

My gynae surgeon just got back to me and gave me a script for Tibolone (Livial), a combined HRT, with estrogen, progesterone and testosterone. He recommends this to many of his endo patients and had good feedback from them. He is a wonderful surgeon and doctor so I trust him. I am going to do some more research and try out this Hrt soon. Check this out as you were thinking of asking for testosterone too. From my research, getting all three including testosterone may be the best option as testosterone level dips in menopause causing all sorts of havoc (lethargy, tiredness).

[BloomingMarvellous]

Info sources for you ;

Balance App which has the hormone info by bucket load including HRT and endo.

Keep going on the Testosterone quest - get a private test if feasible . Androfemme is available in Australia- lucky you ! Unlike your UK counterparts who have to get it imported or use a version designed for men. Low levels of testosterone are an issue for endo sufferers...

Heal Endo by Katie Edmond's - good nutritional and lifestyle info for endo.

Dr Angie Muller on @corecoverypt - pelvic physio work essential for core health which has a massive effect on regulating hormone function and gut function. Drink plenty of water .

Deal with regulation issues ( tough in menopause!) and centralised pain management via Curable App . Look at balance of level of self care needed to stay upright and functional. Sometimes , NO frequently 😂, we can inadvertently add to our stress massively by over trying to fix ourselves . Key to be able to hold that at a useful level rather than having whole life dedicated to it .

[jen2023 in reply to BloomingMarvellous]

Wow, thank you so much for these wonderful recommendations! I will definitely check the apps you mentioned, especiallythe pelvic physio will be super helpful. I am looking into my gut issues, i think it'll be a game changer for menopause symptoms as I have always had gut problems. I follow heal endo on Instagram, haven't read her book yet.

Emotional and mental regulation is tough. I am trying my hardest to crawl out of this heaviness, not easy though....

Thanks again for sharing these important info!

[BloomingMarvellous]

hope they are useful🌸