Hysterectomy

[ginger83]

I went to see my consultant today and am being booked in for a hysterectomy. I'm so happy, was convinced they wouldn't book me in for it x

[DebsieB]

Bless you...I hope with all my heart it's the answer for you. This time last year I was ecstatic as I too had been booked in, was at my wits end with fatigue and pain. I had TAHBSO in April 2012, aged 43. I felt I'd been given my life back...such an amazing feeling to go out, iron, clean, shop...sadly that feeling hasn't lasted. For the last few months my symptoms have been creeping back, that familiar overwhelming feeling of complete exhaustion that washes over is definitely here. I'm in pain and feeling anxious once again.

I put my absolute trust into my Surgeon, taking HRT straight after my op. I don't know if this is a factor but highly likely. I changed my diet, even starting. Facebook group for Diet and Nutrition Support...

I'm plucking up the courage now to ask for a referral to a Specialist Endo Centre part of me doesn't want to as I know it's then that it all becomes "real" again.

I really, from the bottom of my heart, wish you loads of luck xx

[cupcakegirl in reply to DebsieB]

So sorry you've been through this. The likelihood is that some tiny traces of endo were left behind and the HRT caused them to grow and spread, but then I know lots of ladies who have not taken HRT and it's still come back.

I know there are quite a few ladies with post hyst endo on the endo UK boards - they're pretty quiet these days but you get responses eventually.

I'm so sorry this has happened to you - if I, as a lay person, know that hysts are not a cure for endo, gynaes should definitely know and stop doing these ops unless there's a genuine reason (eg adenomyosis not endo). I'm hoping that some patients will file medical malpractice suits as its the only way that gynaes will take notice and they be saving a lot of other ladies from the same fate. I don't get how gynaes can say its incurable one minute and that a hyst will work the next - its evident that it's nonsense. Worse, some gynaes are removing just the womb and leaving the ovaries behind which practically guarantees the endo will continue to spread - since endo is outside the womb, why would they do this? I can understand removing just the ovaries - but then they give the patients HRT! They're supposed to be cleverer and have more knowledge than me - clearly they don't! If some women's endo can still grow on zoladex without HRT, when the ovaries are shut down, why do they think removing the ovaries will fix everything? I'd rather spend a decade to twenty years on zoladex and wait for menopause than have an irreversible op.

I'm so sorry this has happened to you and I hope you can get some help.

X

[cupcakegirl]

I've already said this a few times here today but please do lots of research on this - a hyst is not a cure and many women end up worse off afterwards as the endo is harder to treat. Your best bet is to have both ovaries removed along with every minute speck of endo (which is practically impossible) and take no HRT but even then it could still come back. You're also likely to get severe adhesions from the surgery which will cause you pain too. It's also common to get nerve damage after a hyst which can cause awful pain and is very hard to treat.

Have you tried every other option (excision surgery by a specialist, drugs like zoladex, proper pain management etc)? If not, please consider these first. If you have, please speak to as many ladies who have had hysts here and on the Endo UK boards - I've spoken to so many women who are even worse off after their hysts (some gynaes don't believe them and they any treat it will even if they do) and I don't want to see anyone else in that situation.

Hugs

x

[ginger83]

I will be 30 this year and have suffered with endo for over 10 yrs. I've had 3 laparoscopies, tried many different types of pill, had the implant, injection and mirena coil- all to no avail. I also had 6mths of Decapeptyl injections. I have two little boys who were both born via sections. I will be having my womb and cervix removed but will be keeping my ovaries as I'm told no surgeon would remove my ovaries at my age. I know there is no guarantee that this op will solve all of my problems but it's a risk I'm willing to take. I also have problems with very heavy periods and sex has become practically impossible. I just want to be able to get out of bed in the mornings get on with my day without all the pain

[figgy]

Hi,

I have had a hystorectomy with both overies removed, it has changed my life. I know it is not a cure but for me the combination of heavy periods and endo pain overtook my life for over 30 years. Three outfits in half an hour was the norm meaning going out was out of the question. Yes even though I had both overies removed I still get pains in my hips and my legs and my back and yes there is no cycle to be able anticipate when the pain is due and I have to watch 'triggers' which set it off (a new learning curve) yes I have had further endo removed since my hysterectomy.

I count myself lucky that I don't get that pain where it feels your insides are falling out any more nor the sickness and fainting, I don't have to plan my life around the 2 weeks a month (if lucky) I am not drugged up to the eyes. I have the best quality of life I have had for over 30 years.

I made my decision knowing it wasn't a cure and wouldn't make me endo free but that I would have a better quality of life and even though I have plenty of pain it is a better quality of life for me.

Just thought I would share my experience as it may help someone making the decision to have a hysterectomy or not ....

xx

[ginger83]

Hi figgy, thank you for your comments. I'm aware that there is no 'cure' for endo but as I'm sure is the case with all endo sufferers, I just want a better quality of life and feel this is the best decision for me. It really does help to hear from others who have been through this xx

[figgy]

Hi ginger83,

I really hope you to are able to get a better quality of life, and I wish you many years of less pain. If you have any questions you are most welcome to PM me any time.

xx