Planned Hysterectomy - Starting to Panic

[SquishiZom]

Hi everyone, I am a 34 year old with endometriosis, menorrhagia and adenomyosis, the endo being diagnosed when I was 19 and the adeno last year.

I have had numerous treatments over my life including contraceptive medication, Zoladex and laparoscopy surgery to laser the endometriosis about 10 years ago, which sadly ended up with me having my left ureter cut which led to septicemia and 10 surgeries within 5 months to correct the problem. To say I was left a little shell-shocked from the whole experience is an understatement.

Unfortunately endometriosis is a vindictive cow and doesn't care that I didn't want to have more surgery and over the last 10 years has grown back with a vengeance. I am in pain and discomfort for 2 weeks of my life every month. I don't have any children and I am (if I don't think to hard about it) ok with this.

Finally I was given the go ahead for a partial hysterectomy (keeping my ovaries) in December 2020 and today I was told by the Urology team (who will be there at the surgery) that a date has been penciled in for October 11th.

I am starting to panic.

Its not the never being pregnant that's scaring me, or having to go back in for surgery (although that does come close), but the side effects of having a hysterectomy. I have heard of so many horror stories. Been told that hysterectomies do nothing for endometriosis and just the thought of going though it, to have nothing get better is frightening. I mean, this surgery was suggested by my Gynae consultant who specialises in endometriosis...but so was the surgeon who did my surgery 10 years ago and who didn't believe he had done anything wrong as my stomach cavity filled with urine making me look 9 months pregnant.

Basically I am asking for feedback from anyone with endometriosis who has gone down this route. How have you found it? Is it worth it to get my life back? Or was it the worst decision you made?

Thank you for any help you offer.

[veggiegal]

Hi, sorry to hear about your situation. It is scary and frankly completely crap to have endo. I had a hysterectomy 5 years ago primarily for adenomyosis. I had the endo excised at the same time. I kept my ovaries as was only 42. The op was fine. I had complications afterward relating to bowel illeus so I'd recommend looking up how to make sure that you go to the loo after wards as that was pretty horrendous and could have been prevented easily if I'd known about it, I think. I've had 5 years of being virtually pain free and in comparison to what I had before that was total bliss. I've done loads with my life, travelled, exercised, just enjoyed being out of crippling pain. Unfortunately the endo has now come back so it hasn't been a cure for me. But, for the 5 years I've had it was worth it. Good luck with your decision. I hope others reply with their experiences too. Sending warrior hugs x

[SquishiZom in reply to veggiegal]

Thank you so much for answering. After all the problems I suffered last time I will be extra vigilant to make sure everything is working as it should!

And that sounds amazing, 5 years without pain and discomfort, sounds like a dream.

Your reply has really helped me and I thank you so much for sharing.

[Kater66]

Hi, I really feel for you.

After over 20 years of horrendous pain from endo and adeno, partial hysterectomy was a route I took back in 2010 in my early 40s. I have to say it was completely successful and changed my life in a hugely positive way! 100% I have never looked back and wish this had been presented to me as an option much earlier in life.

Like you I was given contraceptive medication to manage period pain early on (already at 16 although was never diagnosed until I was over 40) and it was never explained that it was anything other than normal. When I tried having a coil fitted instead in my 20s, the pain was so bad that I passed out so they gave up. Even going through fertility treatment (which incidentally worsened the symptoms and anyway did not work) I was given no guidance other than to suck up the pain.

The endo had also impacted my digestive system so every month it was impossible to be far from a toilet. Really unpleasant.

I was working in France when my lovely gynae there finally understood and sent me to be operated via keyhole surgery which was done really quickly with almost no pain at all afterwards. It did take 6 weeks to recover completely - very tired, slept A LOT and unable to walk far. Even getting to the boulangerie to buy a baguette at the end of my street was a major triumph in the 3rd week. However that 6 week recovery period was all it took and in the scheme of the years of suffering was over like a flash!

Since then I have often reflected how happy I am to have taken this step. No regrets. AT. ALL.

Even though I now have quite a few menopausal side issues, they are so mild in comparison to that awful debilitating pain and inconvenience. that I can just brush them off, except for the increased anxiety, but I do a lot of things to ease that.

I hope that sharing my overly positive experience of a hysterectomy can give you the confidence to go ahead if you so choose.

Sending hugs also xx

[SquishiZom in reply to Kater66]

Oh wow, such an amazing response, I am so so happy that your hysterectomy changed your life for the better it sounds fantastic.

They refused my request for a hysterectomy multiple times over the course of the last 10 years, claiming my age and lack of children as the main reason, but I think that now I am nearing 35 and my fertility rates would drop anyway, they finally agreed!

I also had the same experience with a coil! So much so that they had to call my mum in (I was around 24 / 25 ) because I had to be put on gas and air!

And again, the same with the digestion issues, half the battle is being near a toilet and previously employee's have not realised the impact of a women with endo using the only bathroom in an office for several hours!

Thank you again for sharing your story and review of having a hysto. I really appreciate it and I think I am taking in more of the positive future that the negative and will hope for the best!

[Sammylou_88]

Hey, I can totally relate to your fear, I am booked in for mine on the 14th October, for very similar reasons as yourself and similar age of you as well. My consultant has been very clear with me that although he thinks this is the right move for me, as I have now got multiple rather large fibroids causing problems, that there is no guarantee that I will be pain free. I go through a mix of emotions on a daily basis from being hopeful and happy that this may be the end of it all, to being completely terrified. I really hope it does work for you. And that you can finally start getting your life back.