Hysterectomy needed : Hi ladies, hope... - Endometriosis UK

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Hysterectomy needed

Katinldn profile image
13 Replies

Hi ladies, hope everyone is having a pain free day. After years of endometriosis and numerous other gyne complications and problems it has been decided that a hysterectomy would be the best option. I have had countless laps, numerous other surgeries and infections and exhausted every hormonal treatment under the sun so this has been a long time coming. I am 34 and was blessed with an absolute miracle that is my son but still feeling absolutely terrified. I just wondered if anyone has any advice, or tips that will help me get through the next couple of weeks Xxx

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Katinldn
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13 Replies

Hi

This sounds like the best decision for you and one you have not made lightly.

Im coming to that maybe myself not just for endo,but tired of the heavy bleeding.

You have your son to think about,so make that your focus in your recovery and it will go well.

Keep that hot water bottle handy you will need it.

Prepare meals beforehand,as you will need help for those first 6 weeks.

Make sure your iron levels are up,they often do an infusion over here first,to prepare you for the recovery.

Drink plenty of water before you go in and after it aids in recovery and will help stop the abdominal muscles from cramping so much while they are healing.

This is going to be a relief for you when is it happening?

Please keep us updated with your progress.

Im hoping you will be like so many others that say it gave them their life back.

Best of luck

Rose xx

Katinldn profile image
Katinldn in reply to

Hi Rose, thank you so much for your lovely message and really helpful tips, it is really appreciated. The big day is on Monday. Filled with both relief and fear at the same time. Sorry to hear that you are suffering with similar pains. I really hope that you get the relief you need tooxxx

Katinldn profile image
Katinldn

Hi there, I am having the surgery done privately but my surgeon is BSGE accredited. They have said that they will keep my ovaries which I am pleased about as I'm only in my thirties. There are a number of issues which led to the decision. I had a bicornuate uterus whjch was diagnosed by a lap at 16 after some pretty nasty complications. This was then followed by years of endo and more laps. I was very lucky to conceive naturally and carried my son in my right side but this caused a lot of internal damage to the uterus which led to a partial septum removal. I went on to develop PID after my csection and have being plagued with chronic PID for the last six years and being hospitalised five times. I also developed rectal/vaginal endo and adhesions which were in my pod and removed earlier this year but as a result of all of this I have been left with lots of scarring, inflammation and chronic pelvic pain. My cervix has been pulled up into vaginal wall after numerous vaginal surgeries and continually inflamed. I know that a hysterectomy won't 'cure' me per se but if it can have even a slightly better quality of life them I am happy to do it. In the six years that I had my little miracle, I have spent every single year of his life in hospital. I will do anything to be a normal, healthy mum for him. Sorry for such a long history, there are just so many factors that have led to this stage.

Tboag profile image
Tboag

Hi I had a hysterectomy in July last year for adenomyosis, it wonderful not having periods and that awful pain for 2 days every three weeks, andy pain is loads beter, unfortunately I wasn't under an endo specialist in a bsge centre, and I have Endo too, I had excision surgery for endo in march last year, but I'm still in pain, I believe this is due to not having a thorough excision job in a bsge specialist centre. And I'm now awaiting another lap to have a look around see if any was missed,

As you are with a bsge centre I presume they will thoroughly excise all endo at the same time, but I would suggest you confirm this,

I recovered well from my op, and it wasn't as bad as I thought it would be, good luck and let me know if I can help with anything on your mind xxx

Katinldn profile image
Katinldn in reply to Tboag

Thanks so much for your reply. Sorry to hear you are still having to go through more surgery. Hopefully your last lap will be the one that finally sorts it for you. Really pleased to hear that the op wasn't too much of a struggle to recover for either. Will keep everything crossed for you that you get the outcome you need x

JeanOsborne profile image
JeanOsborne

Hi the fact you're having op on Monday is good as you have less time to think about it all.

I waited 7 months for mine and it was torture. But it was worth it. Had my op in March and feel so much better than I have for a very long time. Best thing I've done and I have no regrets.

Make sure you get plenty of rest after op but also make sure you keep moving around as this will help with healing, also if you stay still for to long you get so stiff and tummy will be sore when you do get up.

If you find you have constipation afterwards try warm prune juice,olive oil will help lubricate and camomile and spearmint tea is quite good for digestion.

Good luck for Monday and I hope this gives you some relief from all the pain so you can concentrate on little one.

Katinldn profile image
Katinldn in reply to JeanOsborne

Thank you so much. It's really reassuring to hear that you had a positive outcome from it all and feel so much better x

Marcia71 profile image
Marcia71

Hi

I'd recommend taking a look on the hysterectomy association website as its run by people going through hyster. I found it really useful when I had mine in Feb 2015.

Be prepared to be unable to do much at all straight after so have plenty of help with everyday tasks like cooking.

Good luck and hope it all goes ok.

Katinldn profile image
Katinldn in reply to Marcia71

Thanks for the tip, will have a look at the website. Can I ask how you feel now you have recovered from the op? I am really lucky to have lots of help at hand. Will enjoy a break from the cooking and cleaning 😉

Marcia71 profile image
Marcia71 in reply to Katinldn

Hi

Unfortunately due to endo pain continuing I don't feel great at all. I guess I haven't really had chance to recover but I'm unusual by all the ladies on the hysterectomy Assoc website - most say how great they feel after, and usually in a few months so don't be disheartened by my experience!

I am very glad not to have the monthly pain and migraines and the heavy bleeding so I should be glad that they've all gone I guess but the pain is rather debilitating stopping me being grateful.

Katinldn profile image
Katinldn in reply to Marcia71

I'm so sorry to hear that. It's so disheartening to go through such a big procedure and it not resolve your problems. I really hope you get the relief that you need soon xxx

Marcia71 profile image
Marcia71

Thank you. It is very disheartening as you think all will be well and you end up with another set of problems but I do seem to be unusual so don't be disheartened before you get there. I'm sure you'll be ok. Especially as BSGE accredited as they do sound like they know what they are doing !!

Katinldn profile image
Katinldn

Hi ladies, thanks for all of your messages last week in the run up to the big H, they really did help to calm my nerves. I am now sat in hospital 3 days post op and doing really well. Even though I have the usual post surgery pain, I already feel better than I have done in years. The pressure and inflammation has disappeared and my toilet habits have improved dramatically. Such a relief!

The results of the surgery showed that I had severe pelvic congestion syndrome and excessive free fluid as a result of chronic PID in the uterus on top of the scarring and septum damage they were already expecting. The thing that surprised me however was that they also found a 4cm cyst in my pouch of Douglas. In March I had an op to have this area excised from adhesions so was shocked to find that after only a couple of months (and only one period) something had returned. Is it normal to get cysts in this area and is it something that can return as I still have my ovaries?

Thanks ladies xxx

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