Anyone experienced perimenopause with endometriosis?

[Nikkky]

Hi everyone. I’m 44 and I’ve already mentioned in previous posts that I had a hysterectomy 4 years ago (everything removed apart from 1 ovary). As well as having adhesions I’m pretty sure my endo has returned as my pain has got worse and my bowel symptoms have returned. I also think I’m going through perimenopause. I don’t get hot flushes but have the following: constant headache, pressure/cotton wool feeling in my head, dizziness, depression, fatigue, irritability and can’t concentrate on anything. Also, for the last 4 months I’ve had the most horrendous anxiety and fear. It’s left me barely able to function and I’ve felt like I’m losing my mind. Last year I had my FSH levels tested twice (1st result was low at 15.3 and 2nd was higher at 44.7). G.P said it’s an unreliable test and I started on 1mg Estradiol HRT tablets anyway. I was worried about taking oestrogen only HRT because I knew it might cause endo problems. G.P said because I don’t have a uterus anymore I don’t need progesterone. I know this isn’t true but I didn’t feel I could challenge her about it. My bowels symptoms returned within a month of taking Estradiol and my pain got worse. I self referred to a private gynae who tested my FSH (10.7), LH (18.5) and Oestradiol (882) levels. I was told the results were non-menopausaland to come off HRT. Well my side effects, especially my mental health, has gone from bad to worse since. Should I be back on HRT but asking for progesterone as well as oestrogen? I’ve looked into seeing a private hormone doctor but there’s a 3 month wait and I can’t cope any longer. Any advice on this please. Sorry for the long post! It’s all so complicated and confusing. Thank you xx

[Smokey2020]

Hi. I wanted to reply as I’m due to have surgery next week and ovaries and uterus are going. I’ve been advised by the endo specialist to take estrogen and progesterone continuously after surgery until age 51 to help reduce risk of osteoporosis and menopause symptoms but also progesterone will help suppress any endo they can’t remove. It’s what they recommend so I’d say if you’re considering hrt again request both hormones. I’ve found ‘my menopause doctor’ website helpful and there’s a podcast ( number 88) which is with Chris Mann an endo specialist and he talks about hrt usage so you might find that helpful. There’s also a video about surgical menopause which you might find helpful as well as gives lots of info about hrt. Hopefully you can get something to help your symptoms and give you your life back. 🤞

[Nikkky in reply to Smokey2020]

Thank you so much for that info, it’s a real help. I’ll look up that website. I feel like I need to arm myself with some facts before speaking to my g.p again. Wishing you luck with your surgery, hope everything goes well xx

[CofG in reply to Smokey2020]

I was never offered any hormones after my hysterectomy in 2019 and 7 months later they found a new cyst in the healthy ovary they left behind. they removed womb and one ovary, tubes and cervix. I was referred to an endo specialist gyne last year who sent me for an MRI and said the new cyst is another endometrioma with a smaller one on the ovary and bowel adhesions. I said I didn't want surgery again to remove ovary as it would be a complicated and lengthy one and I developed a pulmonary embolism 6 days after surgery so she said to just repeat the MRI in a year's time. She never ever mentioned anything about putting me on HRT or even just progesterone to try and treat the new growths... why not???? Anyway, my symptoms are now so bad, mainly cognitive decline and feeling disoriented, unable to focus or learn anything new as I am not retaining anything. Feeling anxious and tired. Panic attacks with palpitations. I have been to my GP so many times in case it was early dementia and I had a brain MRI requested by my ENT consultant as I also had some hearing loss but it was mild after a flu in 2016. Then 6 months post surgery I was experiencing dizziness and vertigo and further hearing loss. It's now severe with tinnitus and it's been awful. Now I know that this is also hormone related. It must be. I called the endo specialist's secretary and she called me back which was awesome. I have asked for a hormone treatment. She's going to order another ultrasound as I keep going to wee every 30 mins and at night. I also suffer with insomnia now. I keep waking up at 5/6am with anxious thoughts. She's sending me forms to test my hormone levels although last time I had a hormone test in February this year, my progesterone was very low and my oestrogens were sky high. That is why I didn't think I needed HRT as the surgeon said my one ovary would keep me safe from becoming menopausal. New cysts have grown and endo is worst so excess oestrogen is obviously causing this!! Why are they still not prescribing progesterone??? I saw a private functional doctor who has charged me so much money and done nothing but prescribe me a bioidentical progesterone cream that has done nothing at all. And she had me do expensive private tests and put me on expensive alternative supplementation to try and fix dysbiosis in the gut and now says I have a mould infection (after another expensive test to find it) which apparently is causing the high oestrogens circulating and not being cleansed out by the liver so I also have adrenal issues... It's endless!

I have made an appointment to see the GP who is the women's health GP to ask for Utrogestan as I read Nikkky's post and she has been really helpful. I will ask for a low dose/patches of oestrogen too to see if it helps with my memory issues and hearing issues. I pray to God that it is not too late to reverse all the damage that's been done by the lack of hormone support not given to me 4 years ago... I still don't understand why my oestrogen levels can be so high. And I am a little nervous about adding more. The functional nutritionist says to not even dare to add more oestrogen as I am oestrogen dominant and she says to focus on cleansing the mould but I am not sure that is the reason for the oestrogen dominance... I know I have been oestrogen dominant for years and years and I probably had endo for many more years but was never diagnosed. Clearly it is the high oestrogens that are feeding the growths and the endo that is why I am concerned about adding more to the mix. Nikkky has explained that it is the imbalance between the progesterone and the oestrogen that's the issue. I must have not had enough progesterone for years then...

[Avo121]

Hi Nikkky, I am so sorry to hear of your struggles,but,please take care with taking any hormones when diagnosed with Endo.I had a TAH,bilateral oophorectomy, and small bowel resection, many many years ago due to Stage 4 Endo.(After many Laps and Ops)

I then was given Estradiol implants for the early menopause.BUT 4 years later, due to the Estradiol I developed Endometriosis again, and an Endometrioma blocking my Ureter. Complex Surgery removed this, then I was placed on Livial tabs,

( synthetic oestrogen).This keeps all those horrible Menopause symptoms at bay and I still take a small amount each day.

Though my Endo has ‘burnt out’ after 40 years I am now struggling with pelvic nerve entrapment, due to all the surgery.

You need to find an Endo specialist- but sorry cannot advise you as I am in Australia.

[Nikkky in reply to Avo121]

Thanks for the advice, it’s much appreciated. Take care x