41 Perimenopause? Femoston. History of unusual fibroid- concerns. Help!

[weekari]

Sorry this is quite long as my history of issues is complex.

I have been struggling with my health for 6 years (when I was 35) it started with fatigue and headaches then skin issues (tiny blisters on face and rashes on neck & forearms) then horrendous bloating, abdominal pain and finally crippling back pain. After a lot of being messed around and overlooked by Drs, I was finally found to have "a large chaotic and bizarre mass", which was removed in 2019. It turned out to be a pedunctulated fibroid (growing outside of uterus) which had partially degenerated and then became parasitic, attaching itself to my bowel, kidneys, liver, pelvic walls, absorbing blood and nutrients to grow. It also had a huge blood filled cyst. I was treated in an endometriosis centre as they thought it could be endo but none was found and pathology came back as a fibroid. The surgeons said they'd never seen anything like it. I had 3 months of GnRH analogue to put me into chemical menopause before surgery to shrink the mass and make surgery less risky. I had extreme menopausal symptoms with that- I could barely function (I didn't take HRT with it).

I had complications after surgery (severe anaemia and pneumonia & pleuracy) so recovery has been slow but I did improve a lot- back pain and bloating now totally gone. Fatigue has improved a lot- I could barely function before and now I can have a life. But, I still feel there's something not quite ok. I still feel sluggish, brain fog, poor quality sleep and pretty much every menopause symptom.

I also have days of extreme fatigue where I can hardly function at all- this is how I used to feel every day but now it's maybe a day every 10 days or so.

After the chemical menopause, my period returned and I am regular (though cycle length varies between 25 and 33 days and I was previously always 28 days. After the chemical menopause, the menopause symptoms never fully went away and since January this year, they started to increase again and my fatigue worsened. I paid to get a hormone profile done privately and my oestradiol was low and FSH high. I went to my GP who said she'd test my hormones but they came back 'normal' though I don't actually know what was tested and what the levels were. I thought this seemed odd given my symptoms and the private test, so I paid for another private check this month and my oestradiol is literally on the line between normal and low and my FSH still high.

My GP has prescribed me Femoston, which I've just started, I'm on day 5.

I have no faith in Drs after everything I've gone through and this is a new GP for me- I wasn't particularly impressed with her assessment of me (I first went to her with this right at the start of the covid outbreak so she's probably super overwhelmed). I have a few concerns and questions, which I'd love any advice about...

1. My history of having a very unusual fibroid and taking estrogen- I've read in the pamphlet that this is something to discuss with the GP- I brought it up and my GP had nothing to say about it and in the end I asked if I could be sent for an ultrasound to check whether I have any and monitor- she said she referred me but they won't be doing routine untrasounds under lockdown...so I am worried about this. Does anyone know how risky it is to take HRT if there is a history of troublesome fibroids?

2. I'm also wondering if I've actually been perimenopausal all this time- since my issues started 6 years ago. Could going into peri cause my fibroid (which was relatively small back then) to partially degenerate and then grow the veins to my organs to survive my body's reduction in ostrogen? Underlying all my health issues, could it have been perimenopause all along?

Would this explain why a short course of the pill a few years back totally resolved my issues for a while?

3. If I have been perimenopausal all this time- since 35 and having quite significant health issues as a result, should I be getting my bone density checked? I have a lot of joint pain which I've attributed to the chemical menopause but could this be issues with my bones?

I know I have an unusual history but if anyone has any advice, i would be very grateful.

thanks

[Sasical]

I can't offer any help but I just wanted to say how sorry I am at the ordeal you have been through and I hope you get the answers you need soon. Don't give up until you find a doctor who actively listens to you andyour symptoms as a whole, there aren't many but there are some out there.

Good luck xx

[HayleySanna]

Gosh I’m sorry to hear all this.

So I have several ideas/thoughts that may be of help:

Firstly in regards to the fsh and estrogen test- it is very important that you do 2 tests to confirm menopause and they need to be 6 weeks apart- so if your GP repeated the second one less than that then it could explain those findings you mentioned- I’m sorry you felt you had to pay for those tests- you should have had them sorted on the nhs.

In answer to your point 1- did they just remove your fibroid or did they have to do a hysterectomy- if you’ve had a hysterectomy then of course there is less risk of having HRT. I personally wouldnt be bothering with a scan at this time- especially if you’ve just been prescribed hrt and also if you have no symptoms- bleeding, pain etc it won’t be that useful- I would, in view of your history, get your GP to write to gynae for advice abou whether you should have HRt- especially in view of the complexes and usual nature of the fibroid- gynae should just send a letter back.

In answer to point 2- no being in perimenopausal will not cause your fibroid to do this- if anything being perimenopausal should just cause your fibroid to shrink as it’s not getting the estrogen it needs to grow. It therefore wouldn’t have been able to grow into blood vessels.

In answer to point 3- as your bloods suggest your perimenopausal now at the age of 41 this is defined as premature menopause and so yes bone density is a concern- you can’t get a bone scan yet which is what you would need to diagnosis osteoporosis due to COVID but your gp could certainly check you calcium and vit d levels- in infact I would probably just prescribe you vit d and calcium supplements (after you’ve had the bloods) just because I think it would benefit you hugely in view of your past medical history.

Lastly has your GP discussed treatments for menopause that are not HRT- maybe await what gynae say re HRT and if it’s not recommended explore non hormonal options as there are a few and they can really help with some of the common symptoms- flushing, mood disturbance etc

I hope this helps. Xxx