Advice would help PLEASE!!

I am 36 years of age and I was diagnosed with endometriosis in November last year after 18 months of pain. Every month for the first 3-4 days of my period I would be in total agony especially when passing water. After 18 months of being fobbed off I went to see a different GP who sent me straight to the hospital she thought I had a cyst on one of my ovaries.

After several scans and a laparoscopy I was told that I had severe endometriosis and a 5cm cyst on one of my ovaries but the endo had stuck everything together including my bladder and bowel. No surgery was done and I was sent for a MRI scan to be seen back in 6 weeks in the out patient department.

When returning 6 weeks later I was told that I needed to have one of my ovaries and tube removed as well as the endometriosis. I had also got to see a bowel and bladder specialist before they could go ahead with the surgery

.

After another 3 weeks of pain (yesterday) I went back to see the doctor at the hospital as the pain was really bad and was getting me down. I was asked if I was considering having any more children to which I replied no (I already have a 16 year old daughter) and was told that I could have an injection (Which I had) to close down my ovaries and stop the pain and they would recommend a full hysterectomy due to the mess inside.

I have been told that it could be up to 4 months to get the operation due to seeing the bowel and bladder specialists first.

I have a few questions which I am hoping you could help me with I no everyone is different but any advise might help me:

1. What are the chances of me having to have HRT before (now I've had the injection) and after the hysterectomy??

2. What will be the recovery time after the hysterectomy??

3. Has anyone had problems with bowel and bladder during the removal of the endometriosis??

4. What sort of time have people had to wait for a hysterectomy?

Any advice would help! Thanks

2 Replies

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  • you do not eed a full hysterctomy and any decent endo surgeon would not recommend one at your age. You can certainly have a partial, but you should aim to keep one ovary which will avoid any need for HRT every day for decades to come.

    I am getting by very well on just one ovary and so are many other ladies on the forum.

    So it is certainly a valid option.

    The drugs you have been given do have risks of very powerful side effects. Find out the name of the drug and then make sure you look up the patient information leaflet onlne and inform you family members of the possible side effects as some can be severe and it could impact them too with your mood swings and so on. These are cancer drugs - and very powerful. So you will experience quite a number of side effects.

    You cn quit and not have any more if it gets too much. They are not a cure, they are shutting down your pituitary gland in the brain and that has unwanted side effects which can make life even worse in other ways - though yes they will calm the endo pain down in the meantime.

    So be careful and let your nearest and dearest know what might happen.

    I had some work done on endo on the bladder and post op the electrical signals in my bladder wouldn't settle and I had to take drugs for a year and half just to be able to go pee, so that is a possible consequence, but mine did settle eventually and I am now back to full bladder control again but it really did take a mighty long time.

    Recovery wise took me about 4 months to be op pain free. I didn't have a hysterectomy.

    I had a salpingo oopherectomy on the left side - two endometriomas removed one from each side, and the 8cm was stuck in the POD (pouch of douglas) - also had work done on adhesions and endo everywhere else too.

    It was an big hole op not a key hole op in my case and probably will be for you too, if the bladder or bowel or both are involved.

    I wouldn;t for a second say it was an easy op or a speedy recovery - it wasn't, but nearly 3 years later and I am a whole lot better than I had been for a long time.

    I have a mirena installed to stop my periods.

    My surgeon advised that he wouldn't do full hyst ops for endo on anyone under 50 if he culd avoid it. Because of the long term risk to health, so he prefers to do all poss to save at least one ovary. Which seems to have worked out well.

    Best of Luck in th coming weeks - it will seem like a long wait when you are in pain, so make sure your GP gives you strong enough pain relief to get you through till the op.

  • Hi,

    I was in the same position. After my first child though I decided enough was enough. I was admitted to hospital in July and was told I had a cyst and adenomyosis on top of endometriosis. The consultant actually sat and told me I qas a candidate for hysterectomy but because I was 32 the NHS would not do it. This almost killed me. I was discharged with pain relief.

    I went back to my gp and broke down. The poor woman didn't know what to do bless her. Sge referred me to a private doctor via right to choose. I saw my new consultant in August and there was no question that I needed to have surgery. I was so relieved. We booked it in for October. However we discovered a complication with my bowel and I was sent to another surgeon. This was in November. My surgery is now due in March due to me needing a bowel specialist also.

    I am unsure of nhs wait times as I was referred. But my dr said I would need hrt until I was at least 50. I had ablation a few years ago and no bowel or bladder problems. He also said that recovery is different in each person but on average six to eight weeks. But this contradicts what I have heard from other women.

    I hope your appointment comes quickly xxx

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