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[EmmaS1980]

Hello lovely ladies,

I have been reading so many of your posts the last several weeks that i've decided to bite the bullet and ask your advice please

I'm 41 and incidentally, after I caught Covid 3 months ago, my periods have been horrendous.

They went from a 7 day period (2 light, 2 heavy, 3 light), 23 day break to 10 day erratic (one day VERY heavy, with very large clots - having to sit on towels; next day no period; next day very light then back heavy again) - with a 14 day break

I went for a Transvaginal Ultrasound and  they discovered 4 large fibroids, as follows:

Bulky anteverted uterus measuring 11.1 x 9.7 x 9.9cm with lobulated contour.

Fibroid 1 - Calcified INTRAMURAL lesion in POSTERIOR wall measuring 5.2 x 5.2 x 4.7cm
Fibroid 2 - SUBSEROSAL fundal lesion measuring  5.9 x 5.3 x 5.1cm
Fibroid 3 - INTRAMAURAL right-sided lesion measuring 5.1 x 4.5 x 3.9cm
Fibroid 4 - INTRAMURAL lesion in the ANTERIOR wall measuring 3.5 x 3.3 x 2.4cm.

Endometrium thickness was 5mm, and indented by a fibroid at the fundal end.

Normal ovaries. There are 2 simple cystic structures in the right adnexa adjacent to the ovary - the largest measuring 2.4cm. No sinister features or abnormal Doppler flow seen. These maybe Ovarian or Paraovarian in origin..

--------------------------------------------------------------------------------

Full Blood Test came back fine - other than low iron counts. Thyroid fine. Though still awaiting FSH, Oestrongen etc results (though these don't prove much i believe).

So i was referred to a Gynaecologist specialist (through Private Medical care via Employer). Explained everything to her and no surprise the Mirena coil was suggested. My best friend has had it 10 years and swears by it, and my neightbour/friend has it and works well for it. Yet i have read SO many experiences from other women regarding the body rejecting it, or it getting stuck so removal through emergency op, or causing severe acne/weight gain.

I have never ever wanted a coil - ever. When the Gynae mentioned it, my initial thoughts were - well, my friend and neighbour had positive experience so maybe its worth a try? But after i got home and ready up LOTS on it, i then thought 'hang on, i've never wanted a coil, so why am i considering it - just because i've read/received a handful of positive experiences?.

What  i don't understand is - i have multiple fibroids/bulky Uterus - so why do i feel the hormonal route is a be all answer? It's merely masking the problem (fibroids) is it not? Why isn't the cause being addressed first (Fibroids)?

From looking at where the Fibroids are located - they are in the Uterus wall, so i don't think an operation is an option (i remember now the Gynae telling me that), so those surgical options of restricting their blood flow isn't an option as surgically, they wouldn't be able to get to them...

I have NEVER wanted children, still don't - and i'd be happy with a partial Hysterectomy. 100%. I've read SO many positive reviews from women who have had partial/full hysterectomies and i just want this option - but apparently i have to try hormonal routes first? Why?! Isn't it my choice? I dont want to go through months and months of stress and potential depression (I have Generalized Anxiety Disrorder and suffer small bouts of depression as it is) - only for it to eventually lead to the surgical route - which is what i want.

I used to be on the pill on and off for 20 years in my 20's and 30's (Microgynon, Cilest etc) and never had any problems with them, but suspect now they're not an option due to increased risk of blood clots? (I quit smoking 7 years ago).

There are so many hormonal routes other than the Minera coil, that i'm becoming anxious just reading all the different options/brand names.

Granted - i need a solution as my periods are ruining my sex life and impacting my holidays (just come back from one where i had to cancel a Zip Wire experience - because i started flooding    )

For the last 5 years, i haven't been on any contraceptive pill and my periods were fine (7 days, and the usual mix of light and ok heavy) - had moderate acne, but never addressed it to be honest). I've started dating and met someone a few months ago (finally had sex after 5 years, protected), but my periods are interfering with my sex life...

I just don't get it - if it's the Fibroids which are causing this (especially clotting), then why isn't that being addressed? Why is the coil being used as an option to plaster over the real issue (Fibroids). I don't doubt hormonally, it appears as though i have too much oestrogen and too little progesterone (cause of my moderate acne? Cause of heavy bleeding, or is that the Fibroids - i don't know    )

Is 5mm Uterus lining average or a little on the thick side? I've read some women have 9-11mm?!

Your help, support and advice would be really appreciated, as i'm scared and don't want to go through the hell of trying different hormones - especially when i'm dating someone and having a great time for the first time in 5 years..

Thanks so much everyone for taking the time to read this, i do appreciate it.

Emma x

[CLKD]

Morning, I too would be miffed.

Would the fibroid/s shrink when using HRT, otherwise why consider that route 

If you opt for hyserectomy which is major surgery, you may well require some form of HRT after.  This is something to discuss B4 you proceed to any firm decision.

I think that 5mm is OK, anything thicker is considered a watch and wait .......... we have to be in control of our bodies, many medics don't consider that side of treatments.  It's a 'this will work' approach, 'whip it out/not'. 

If there isn't any urgency, then wait a while?  I am sure that others will be along with advice.

 

[QueenofReds3]

Hi
I have had fibroids removed. I have been told by my two gynaecologists that HRT oestrogen feeds fibroids .
My mum had trouble with fibroids for years, bad periods, clotting etc and she had a hysterectomy. Maybe they are not offering that because there is a huge waiting list and maybe like you said they want to try the HRT route first. I was offered the mirena coil too as I have a thickened womb lining but I declined it until I have tried other progesterones. Maybe a progesterone in tablet form would be a better option? I am sorry that you are having to put up with this though. Good luck. X

[EmmaS1980]

Hi
I have had fibroids removed. I have been told by my two gynaecologists that HRT oestrogen feeds fibroids .
My mum had trouble with fibroids for years, bad periods, clotting etc and she had a hysterectomy. Maybe they are not offering that because there is a huge waiting list and maybe like you said they want to try the HRT route first. I was offered the mirena coil too as I have a thickened womb lining but I declined it until I have tried other progesterones. Maybe a progesterone in tablet form would be a better option? I am sorry that you are having to put up with this though. Good luck. X

Hi QueenofReds - thanks for your reply

I have heard and read exactly the same thing - that oestrogen feeds fibroids!

As you rejected the Mirena, like i will likely be doing, what other progesterones did you, or expected to try may i ask?

Yes  - i would prefer a pill form for progesterone ( i think it's a mini-pill?), but what about these sprays or patches?....

Thats the only reason why i think they would not offer hysterectomy first - due to waiting lists - but if it's a private hospital, assume not much of a waiting list?

So you saw 2 Gynaecologists?! How did you get to see 2 sorry? Did you want a second opinion i assume?

[EmmaS1980]

Morning, I too would be miffed.

Would the fibroid/s shrink when using HRT, otherwise why consider that route 

If you opt for hyserectomy which is major surgery, you may well require some form of HRT after.  This is something to discuss B4 you proceed to any firm decision.

I think that 5mm is OK, anything thicker is considered a watch and wait .......... we have to be in control of our bodies, many medics don't consider that side of treatments.  It's a 'this will work' approach, 'whip it out/not'. 

If there isn't any urgency, then wait a while?  I am sure that others will be along with advice.

 

Hi

Many thanks for your reply.

Well i've heard the oestrogen (HRT) increases the size of them, so i don't get it either? All that i've read is saying they need to be shrunk/removed. As i'm only 41, i can't go through years of HRT before i hit menopause (which shrinks them apparently), as that may exacerbate them...

I'm having a biopsy in 2 weeks, to check for abnormal uterus cells - so will mention it to her again, otherwise, i'll be getting a 2nd opinion to be honest with you..

[CLKD]

That's right, you remain in control.  It's not an emergency situation.  Get the biopsy results back and review?

MayB. keep a mood/food/symptom diary to chart progress?  That way you can decide if you actually need any form of HRT which doesn't come without it's own side effects.

Do however beware of vaginal atrophy 

[QueenofReds3]

I am post meno so maybe in a different stage to you. I have had post menopausal bleeding twice in the last five years both investigated. First found fibroids and polyps. I was changed to patches for HRT but they seemed to stop working after I was vaccinated so was put on gel and progesterone, but I developed some unpleasant side effects and a bleed so once again investigated by a gynae at one hospital who sent me for a scan hence they found thickened lining and polyp. Had to have a hysteroscopy for both by a different hospital, ( waiting lists causing the change of hospital etc) hence a second gynae. Both are NHS and private specialists, so if I paid I would probably see the same gynaes but I asked lots of questions re why the bleeding and the fibroids and polyps, as I have hash three hysteroscopies in total and tbh I don’t want to go through it again if like recent experience. I was told to come off my patch as it is combined HRT and try provera and gel. If that does not help then it’s the mirena.
Progesterone is the one you need if you have a womb , some women find it hard to tolerate and find the right balance. It is a minefield. Unfortunately I do not think progesterone is available separately in patch form or gel. If you are going back for a biopsy I would ask when you are there what is the best way forward. I do not have knowledge of sequi regimes or what to do if you are still having periods. Mine stopped in 2018, I was blissfully unaware about peri menopause, I seem to worse now with symptoms then I was then. X

[Nas]

Push for a hysterectomy if you think that’s the solution?

A mirena isn’t a death sentence, neither is it forever. You can have it removed at any time. It gets poor press everywhere i think, but it has the potential to keep the womb lining in shape and reduce heavy bleeding.

Your call obviously, but it’s less drastic than surgery at least. If it doesn’t then work, you can say you tried it and want a hysterectomy because that solves the actual issue.

[AKatieD]

The curious thing is that although they do say oestrogen feeds fibroids, there is a new treatment for Fibroids that requires you to take Oestradiol with it (and norethisterone)

It is called Relugolix and was announced last month. It may be of interest/ use to you?

https://www.nice.org.uk/news/article/women-with-moderate-to-severe-fibroids-set-to-be-offered-new-one-a-day-treatment-following-final-draft-guidance-from-nice