HELP! What do I do next?: I had a phone... - Endometriosis UK

Endometriosis UK

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HELP! What do I do next?

Private12 profile image
8 Replies

I had a phone call today with my NHS consultant, I have always suffered from heavy painful periods, excessive pain and very bad hormonal acne for as long I’ve had my periods from age 11 - I am now 23. I had a diagnostic laparoscopy last August to diagnose endometriosis (they didn’t find any) and they fitted me with the hormonal coil too, I am also on the pill to combat those side effects too.

Anyways, I had a call with my NHS consultant today and she said that my only further option is to have the Zoladex injection to induce menopause but I would only be allowed it for six months because of my age! The consultant also outrageously told me today as well that having a baby would sort me out - absolutely not happening & I am upset that they still tell you this.

Has anyone been told this? Have they had the injection & do the side effects of menopause out weight the positives? I’m at a manageable state at the moment with symptoms and I’m wondering if I just have to deal with the way things are as this is as good as it gets! Please help 😞

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8 Replies
BonniesRest profile image
BonniesRest

Sorry you’re going through this. It’s horrible. I’m wondering why they haven’t offered you an ablation. Zoladex inducing menopause seems a bit over the top on your 20s. I wonder if it’s worth getting a 2nd opinion?

Private12 profile image
Private12 in reply toBonniesRest

Hi BonniesRest, I think because they haven’t actually found any endo or cysts or anything is why that’s not an option. I think Zoladex is extreme too. This is now my second consultant with the NHS so I’m now seriously considering going to see a private specialist to offer another opinion 😞, I might however ask for a CT or MRI first to definitely confirm nothing nasty and then take all my findings with me

BonniesRest profile image
BonniesRest in reply toPrivate12

Sounds like a good plan. Take care, and good luck.

Moon_maiden profile image
Moon_maiden

I was told the same thing many, many years ago. It put me off going back over painful periods and managed. I can’t believe they still say it.

I was diagnosed end of last year, lap Feb, now on Zoladex (4 of six) natural menopause hasn’t kicked in yet. I haven’t noticed a difference, the consultant seems to think the MRI says differently. I do take HRT with it. Not noticed any side effects so far.

You’ve mentioned seeing someone else, given my experience and the long delay and now the more severe consequences, it’s not a bad idea. Best thing I did last year. I do regret not doing anything about it now. Do plenty of research though and they have the right experience.

SunflowerLife profile image
SunflowerLife

Hi! I’m 21 and I have suffered with heavy periods, fluctuating weight, mood swings, acne and severe stomach pain. I’m due to have my lap on 6th July to see if I have endometriosis or polycystic ovaries - they are also fitting me with the mirena coil during the op. I was told that they may not find anything if it is early traces of endo. Similarly, endo and cysts run within my family and my mother had a hysterectomy when she was 34 (she’s now 44) and the issue’s she has had to deal with from going into an early menopause has been awful for her. Due to the risks of already going into an early menopause as it is, she’s had issues with her bone density, back pains, stomach pains, hot flushes, hormones being all over the place and weight problems. Although the hysterectomy did eliminate most of the endo she had (she was at stage 4 or 5 so severe endo), the menopause has caused her many other problems. Furthermore, there is not much research into endo, cysts, early menopause and HRT - me and my mother have found that local doctors do not have a great understanding of the severity of endo and menopause so tend to be very quick to brush it under the carpet, if you do not have the right HRT it will cause more severe issues!

Sorry going off on a tangent... anyways as you are very close to my age, and seeing what my mother has gone through, I personally wouldn’t recommend early menopause. But, do certainly get an second opinion. Also, I’m not sure where you are located, but my mother did some research to find doctors and surgeons who specialise in endo, hysterectomy and menopause and found a great doctor located in London, England who has really helped her. It can be costly but I highly recommend whenever you’re located research top specialised doctors and nurses do help and give advice!

I really hope this helps, all the best x

Tothefuture profile image
Tothefuture

Hi, i had numerous explorative appointments with nhs who continuously wanted to fit a coil . I managed for many years until I went into crisis- 6 months bleeding non stop, flooding with blood like I had wet myself and iron deficient and all the symptoms that went with that . I went private - within 4 weeks, biopsies , ct scan and diagnosis of adenomyosis, which is not so widely considered by some . Fantastic consultant - had a hysterectomy all within 12 weeks , he really did give me back my life. My message here is that I wish I hadn’t made do- . Please look up adendomyosis on the net . Take care and wish you well Kerry

Lofty1589 profile image
Lofty1589

Hi. I’m 20 and on Decapeptyl which is the same thing - induced menopause. As someone so young, I saw it as my only option but I honestly wouldn’t recommend it. It hasn’t worked for me and my Vitamin D levels went drastically low all of a sudden. Technically under 25s shouldn’t be on it because our bones aren’t 100% “there” or something so it could affect your bones down the line.

The best thing I can say is do your research. If this consultant refuses to budge on other things, please do seek another opinion

Christin_a profile image
Christin_a

Do you know if the person who did your lap had a specialist interest in endometriosis? As if it was just a general gynaecologist they could have easily missed it.

I'm pretty sure that the guidelines for zodalex say that it shouldn't be given to anyone under 25 due to the issues with bone density it can cause. And until your 25 yours still developing bone density.

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