Endo following Hysterectomy

[Law1104]

Hi Ladies,

I underwent a hysterectomy last September at the age of 27 following battling endometriosis since diagnosis when I was 21. I underwent 6 surgeries prior to the hysterectomy including an ablation in February of last year which only made my symptoms 10 times worse. I tried every drug offered but nothing controlled my symptoms.

As a bit of background I had extensive endo which when originally detected had encased my left ovary fusing it to my bowel along with adenomyosis. I had around 3 miscarriages and then finally had my little boy in 2013, I was hopeful following my pregnancy that things would improve but unfortunately my bleeding and pain was constant.

Basically I am searching for any ladies who have undergone a hysterectomy and then found that the pain of endo returned. For the last 3 months my left sided pain has returned along with extreme swelling of abdomen and tiredness. It lasts a few days and I can only think it is occurring when I should be having my period. I couldn't stand up straight last month due to the pain.

Any replies would be greatly appreciated!

Thank you

Laura

[JeanOsborne]

Hi Laura you are not alone. I had a total hysterectomy and ovary removal with so called excision in March this year. I'm now in pain again and what feels like having a cycle without the actual period. If endo is severe enough it can produce its own supply of oestrogen so is self sustaining.

Decided to get all my notes from hospital, and when I have these will seek a second opinion as consultant is refusing to help.

If you need to talk I'm here.

[Law1104 in reply to JeanOsborne]

Thank you so much for the reply Jean. What I could never understand really was why they would even think to leave my ovaries in especially my left one as that was where the root of the problem was, that ovary constantly reattaches to my bowel with endo so surely would have made sense to remove it. I know they were reluctant because of my age but now I am no doubt going to end up with a further surgery to remove my ovaries.

How were you after your surgery with regards to emotions, that's my only concern really with having ovaries out

xx

[JeanOsborne in reply to Law1104]

Not great . I had my first counselling session today so hopefully that will help I time. For me the biggest thing was that I don't have children so I suppose I'm still kind of grieving.

Despite all the problems I'm having now I don't regret having the hysterectomy as at least I don't have periods which was the worst time for me, although I had pain all month long this was worse at that time of month. The pain at the moment is intermittent and not as bad as before.

I'm here anytime you want to chat.

[Nmatthews in reply to JeanOsborne]

Hi Jean, just read your reply & im having the exact same symptoms, having cycle symptoms without period after hystrectomy & bso, thought I was going crazy!, saw consultant at bsge yesterday & he said it can happen, I've been given prostap for 3 mths to stop all oestrogen as he said it is in fat cells as well!, my severe pain lasts 3/4 days then goes & comes back in a cycle pattern not on any hrt

[Hidden]

Hi I had a hysterectomy in April and I have more pain now than I did before. My right ovary was left stuck down but I don't know what it's stuck to. I also have cycle pain and I've been getting spotting for a few days each month which is strange - my GP thinks it's either granulation but more likely that I have endometriosis left behind. Xx

[Hidden]

Have you had any abnormal blood results? Mine are all over the place - my liver is affected, I have really low ferritin and folate levels amongst a fair few others that are showing signs of inflammation xx

[Screechowl]

Had hysterectomy in 2009, ends came back in 2014. Currently being seen by endo specialist clinic. I t does seem to be quite common, I had no idea it could happen and thought I was going mad.

[thedogsmother]

Afraid so, my cyclical pain came back within three/four months. I have about ten days of symptoms a month then it recedes. Back to see Gynae next week. I don't regret the hysterectomy as it is improved, no abdominal cramps or periods but definitely didn't cure me.

[Tboag]

I had a hysterectomy in july15 with overies left in, now on the waiting list for another laparoscopy with a bsge specialist centre, and he will take overies out, and excision of any missed endo, I had Adenomyosis too,

And although I feel better than I did, especially the not having periods, it hasn't been a total success,

Just hope the next op helps, xxx

[Marcia71]

I too have had endo come back after hyster and BSO in Feb 2015. Pain is much worse now though as constant.

I was told zoladex (& so I assume pro strap) are pointless if you've had ovaries removed. That was by BSGE specialist.

Also have to be careful with HRT need a combined continuous one.

My GP and two diff consultants tell me I have to get used to pain a s nothing else they can do. Now seeing BSGE clinic and they want me to try another HRT before contemplating anything else. Awaiting a pain clinic appt but all very frustrating and I'm very fed up with it.

I too never had kids as endo comprised fertility and then womb was misshapen so I would have miscarried if a miracle had happened and I got pregnant! So having some counselling whilst I try to live on pain killers.

[Law1104]

Thank you so much for all your replies ladies. I went back to see my GP Friday and I am being referred back to Consultant in Endo Clinic at St Marys, Manchester. I vowed I would never step foot back in that hospital. The pain and swelling lasted pretty much all last week. I said to the GP I have gone through this for long enough now to know when my ovary is sticking again. I am hopeful that they may just remove my left ovary and keep the right one in but obviously have to see what the Consultant says xxx

[EmmainBahrain]

I'm always reading on Endometropolis (FB) that partial or total hyst does not cure Endo. Clearly it helps to a degree if you have Endo on those organs, but it doesn't stop it growin further elsewhere. You mention you had ablation. In any of your surgeries have you had excision? Endometriosis grows down, not just on the surface. Like an iceberg if you will, if it grows deep and through into other organs it's called deep infiltrating Endo (DIE). It needs cutting away, not the surface burnt.

Good luck. Try to reduce any soy from your diet, it is a plant based oestrogen, very similar (chemically) to the estrogen you produce. Read up. Also try increasing anti inflamitary foods and look up the benefits of termeric. Omega 3 and adding probiotics to your diet. It can bring some relief.