Gyno appointment, stress and not knowing where to turn

Hello, I have seen a general gyno today in another city as I had to because they can refer me onto the endometriosis specialist at this hospital which I found through BGSE, previously i was at my local hopstital with no specialist.

He started talking about Induced menopause to see if I can then go on to have a full hysterectomy (I'm 36) but I was put on an induced menopause drug in 2012 and I had a total breakdown and very severe side effects and ended up on a mental health ward it was so bad.

Does anyone know of other treatments I've seen anti pregestorone drugs mentioned on she trust website as a treatment specifically for endo, lots that do not induce menopause and ive been on esyma to help with pms and found it amazing so no I do not react well to progesterone as this was isolated as the problem by my previous gyno by putting me on esyma therapy which is anti progesterone.

Does it have to be this, I'm so fed up as the pain in the last six month each month has been unbearable, I'm on dihydrocodiene and bedridden for four days a month

Also the gyno today said that he wouldn't want to risk a laroscopy because of risks, this is the first I've heard of this, it's the go to procedure and mine is no different to others he said because it's on the bowel even tnough I said I didn't no where it was exactly, he has no notes either on where it is. I'm confused

Anyway I'm seeing the specialist because I insisted but the general gyno said he will just say the same as the above and offer only this treatment, I said well I can at least have access too the pain specialist hopefully. Arrrggghhh scream

I feel lost and stuck any help would help.

7 Replies

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  • Hi your GP can refer you to a BSGE centre of your choice. A hysterectomy will not cure endo. Also at your age you would need to be on hrt unless you keep ovaries. If they are suggesting these injections then removing the ovaries would be the plan. I completely understand why you don't want it, and they are not recommended if you suffer with depression and/or anxiety.

    Definitely wait till you've seen a endo specialist at a centre.

  • Thank you, I have the appointment through already, fingers crossed x

  • First of all, no it doesn't have to be this. It is your choice. The specialist can only make suggestions. It's up to you whether or not you decide to act on them.

    I agree, you really need to see an endo specialist. I have extensive bowel endo (obliterated POD, large rectovaginal nodule) and the bsge consultant has never suggested that I can't have surgery because of it (just the opposite, in fact). It seems to me that what the gynae you saw really means is that he can't do it, not that it can't be done. I am due to have a hysterectomy in March but I am end of the line with the disease and it is being carried out for very specific reasons, not just because this is what you do when you have endo.

    I hope you get to see a decent specialist very soon. x.

  • I thought he was talking rubbish so glad I insisted on being referred onto bsge specialist , your post is reassuring, thanks for replying x

  • The best BSGE Centres have bowel and urinary etc specialists in the Centres, working with them, as removal of endo from bowel etc. is what BSGE specialists are good at. This is as well as finding 'all' the endo, in all its difficult to access hiding places ... and recognising all the different types of Endo tissue - which many regular gynaes do not spot - and then being incredibly effective at removal of the endo: wherever it is. So when you get beyond the general gynae, it may be that you will hear a vastly different and more positive story.

    Meanwhile, try to have all letters, reports, test results etc to hand, and have a talk to the advisors at 'Endo Uk' [link at top of this page] as well as checking out posts by Lindle on this site - she also has a Facebook page, where you can name medics and Centres etc, and talk to others who may know the centre where you are to be treated.

    Hope this helps and that all goes well.

  • They have a whole team with colon and urinary specialists so fingers crossed 😊 I just hope I get somewhere, it's defo the best way forward and I've since found out the specialist is one of the best in the country so fingers crossed x thanks for your reply x

  • That sounds like really great news. Very reassuring!

    I hope it all goes well. Do you have a date for your op?

    Take care x

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