Endo and oestrogen and risk for blood clots

[CofG]

Hi I suffer with endometriosis. It was discovered during my hysterectomy in 2019. I developed a PE 6 days after surgery and I am now on blood thinners for life.

I have been suffering with horrible brain fog, difficulty concentrating and remembering. I get confused because I don't remember things sharply. I have difficulty learning anything new. This is considered a menopausal symptom however my levels of oestrogen are extremely high but my progesterone is very low. Can I still be going through the menopause with high levels of oestrogen? Can these high levels be the endo producing them? I have asked for HRT but I am concerned about my levels of oestrogen being so high already. Gyne says progesterone only won't make any difference to the cognitive issues.

Also, do women with endo have a higher risk of developing blood clots? I think I developed a pulmonary embolism after surgery because of the endo or because the surgeon scraped some of it during the surgery. I wonder if I can safely come off the blood thinners or if I should stay on them because of the endo. The respiratory consultant advises to stay on Apixaban for life but I don't wish to if I don't need to unless I go on HRT as risk for blood clots increases.

Has anyone got answers for these questions? or been through similar situations?

Many thanks!

[Starry1977]

hi, I’ve no idea but at 45 I have awful brain fog. I did have night sweats too but they got better when an endometrioma was removed. I too wander about hrt and endo.

[CofG in reply to Starry1977]

I wonder if we can be referred to a menopause clinic so that we can get the absolute right treatment because we don't want to add more oestrogen to the endo and progesterone only may keep the endo at bay but won't give us the relief from other menopausal symptoms...

[Starry1977 in reply to CofG]

Thats a good idea. My older sister started hrt 12 mths ago. Shes started bleeding again for the first time in years . Shes had to see a gynea today and shes now got a thickening of her lining, ovarian cyst and a fibroid! She had endo removed years ago then had coil. Think there needs to be some understanding if the connection between hrt and endo sufferers

[CofG in reply to Starry1977]

Oh my goodness, your poor sister. That's awful. To be suffering with all those added issues now because of the HRT. My heart goes out to her. I am being seen by a gyne that's an endo specialist but I don't think she is a menopause expert. We need someone who is both!

[CofG in reply to Starry1977]

To be fair, I developed an ovarian cyst -endometrioma- because apparently I have been suffering with oestrogen dominance for years and excess oestrogen is what fuels the endo growth. I was never diagnosed with endometriosis until they discovered it during my hysterectomy to remove the cyst and fibroid. I have been seeing a nutritionist to try and balance the oestrogen dominance. Diet wise, we need to avoid all sugar and simple carbs and gluten. Basically a sugar balancing diet just like a diabetic would. And we need to increase phytoestrogens which regulate levels of oestrogen. These are things like flaxseeds and chia seeds, pulses and organic soy like organic tofu not processed soy.

[Lindle]

I suffered horrendous symptoms that were caused by hypersensitivity to oestrogen to include crippling head pain, dizziness, disorientation, memory loss, inability to concentrate, blurred vision, overwhelming fatigue and others besides.

Endo, especially severe, does produce its own oestrogen but this is directly taken up by the cells themselves without being released into the circulation so that won't be a reason for high circulating levels. What is the level? Oestrogen is produced in other tissues too, including fat cells, and this is released into the circulation but levels would only be significantly high in cases of significant obesity.

Have you had blood tests for menopause - eg FSH/AMH? Since circulating oestrogen is mostly only produced in significant levels by the ovaries (apart perhaps from obesity) it sounds like you aren't in menopause and I would think that these symptoms are likely being caused by the oestrogen being too high. I would certainly steer clear of adding to it with HRT.

[CofG in reply to Lindle]

Hi Lindle, thank you for your reply... I think I am oestrogen dominant but the memory symptoms and all other symptoms reflect low levels of oestrogen which is so strange. A functional doctor was really surprised to find from the Dutch hormone test that my oestrogen levels were sky high so a nutritionist I work with advised that I took a mould test and it's come back positive for 2 types of mould which apparently can also lead to high levels of circulating oestrogen that my body is not disposing off efficiently. So might have some liver detox issues also. I don't really know what the symptoms for high oestrogen are other than the ovarian cyst etc. If it is the opposite as low oestrogen as it happens in menopause, shouldn't I be really sharp in the brain? I am also experiencing anxiety, low mood, lack of energy or motivation and fatigue/stiffness plus the inability to learn new things, feeling disoriented, demotivated, unable to focus, trouble remembering people and events. I don't know what to do...

[CofG in reply to Lindle]

I did have a hormone blood test done in Feb and the levels were

FSH 9.32 IU/L

LH 10.80 IU/L

OESTRADIOL 707.00 pmol/L

I have no idea what these levels mean...

And the Dutch hormone test I did which was a saliva and urine test:

Estradiol E2 was 11.11 with the premenopausal range being between 1.80 and 4.5.

And progesterone was in the postmenopausal range at 2.2 ng/mL.

The functional doctor and specialist in bioidentical hormone treatments BHRT prescribed me with a progesterone cream that I have been applying twice a day but I feel no improvement at all and I have been using it for over 4 months now... perhaps I need an oral progesterone form.