Endometriosis after total hysterectomy

[Gwen172]

Hi all, I am new to this site. I had hysterectomy 24years ago and have had constant pain ever since. I am waiting to see a gynaecologist local. I am undecided whether or not to go private and see a endometriosis specialist in a BSGE centre. I suspect that endometriosis is present because of bad period pains. Has anybody been to one of the centres? Your views would be greatly appreciated.

[Lynne_support Partner Endometriosis UK]

Hello Gwen.

I'm sorry to hear that you are suffering with a lot of pain at the moment. We recommend that people try to get a consultation with a consultant at one of the BSGE accredited endometriosis centres, they tend to have the most experience with dealing with endometriosis.

We do understand that you want to find the best possible doctor and hospital, but prefer that people don't ask for recommendations of specific doctors or hospitals. We will remove any negative comments as they could be defamatory.

Good luck with getting some treatment soon

Best wishes

Lynne - Endometriosis UK

[Gwen172 in reply to Lynne_support]

Hello, thank you for replying. Sorry didn’t mean to break any rules. I have asked to be referred today to BSGE centre so hopefully appointment won’t be too long as I a self funding. Thanks again.

[CJR99 in reply to Gwen172]

Hi Gwen,

I just wanted to get in touch to offer my support and sympathies.

I’m post-hysterectomy for stage one Ovarian Cancer and Endometriosis.For the first 6 months I recovered well despite one or two infections oh and a hematoma!

I had a lovely flat tum again and felt like I’d turned a corner.Then symptoms returned....pelvic pain,bowel and bladder issues you name it!

I’ve since had two mri scans,I’m at the BSGE centre in Newcastle upon Tyne and now waiting another laparoscopy...I see a consultant oncologist who is fairly certain Endo is back!

Please do get in touch if I can offer any support.

As Lynne has wisely said you really do need to be with the experts who can offer the best support.

Sending you my very best wishes and letting you know you’re not alone!

Take care Clare xx

[Gwen172 in reply to CJR99]

Thank you Claire for your reply. I never thought I would be seeing another gynae!! Especially since having total hysterectomy over 24 years ago. I have lived with constant pain and just felt like i had to tolerate it. Last month was the turning point, I should not be having really bad period pains. I am going private to BSGE centre in Liverpool to people who know what they are doing. I never realised that endo could remain after hysterectomy though have read up and now am pretty sure that’s what is happening. A nurse friend has recommended a PET scan. Do you know anything about that? Thanks again and I hope you are feeling ok. Would like to keep in touch. Best wishes xx

[CJR99]

Hi Gwen,

I really feel for you,I do.It’s awful how much you’ve had to put up with.

There is quite a lot of medical reports being written about Endo recurring,even after hysterectomy irrespective of having your ovaries removed.

The gold standard for detecting this is laparoscopic surgery.It is incredibly hard to detect on scans but,some centres do use MRI scans which can pick up deep infiltration of Endometriosis.

Many of us ladies have had clear scans only to go for diagnostic surgery and low and behold there it is!

Gwen it’s naturally not great you’re suffering(I feel much the same so totally understand)but,it is great that your with the BSGE centre.

I do hope you get your appointment very soon.I took in a list of symptoms and fortunately they were very understanding, though the waiting lists up here are pretty huge.

I’ve had my pre-op assessment just waiting for the date to go for laparoscopic surgery and excision if needed.I can’t wait...How said is that?!

Please do ask any questions or lean on me for support.It’s lovely to be able to help.

Thinking of you.

Best wishes,Clare xx

[Gwen172 in reply to CJR99]

Thank you so much Claire. Nobody understands this disease any better than a fellow sufferer. I have been very slow. I feel I have just put up with it. Maybe I am wrong but feel happier now as asking for referral to BSGE centre(which by the way my dr knew nothing about). That’s said it all to me!!! Don’t think I will have to wait long as am self funding. It is 3 hours away but not worried about that. I agree, laporoscopy is the only way. I have 2 of them so know what to expect. I took hrt for 20years and have read that’s not good for endometriosis. Any idea about that? Good luck with your lap and I hope it’ won’t be a long wait. Thank you so much again Claire and if I can be any help to yourself please get in touch anytime. So glad I found this group with like minded people. Wishing you all the best. My name is Lesley by the way. Xx

[CJR99 in reply to Gwen172]

Hello Lesley,

Bless you I'm so sorry to hear this, you've suffered more than enough!

I'm 46 now and to be fair I've been on the Gynae roller coaster since I was about 12!!

I'm so pleased you are going private. Though the NHS is phenomenal I've noticed particularly this year they are under immense pressure and many mistakes are being made.

Lesley I was only prescribed a tiny amount of HRT in August 2017and chose not to take it for the fear of anything returning. Surgical menopause has been pants to be fair!

It's ironic because if you take it there are risks....if you don't take it there are risks.

It's such a difficult decision.

May I ask which centre your're heading to?I'm up in Newcastle and to be fair they are a really nice bunch of people.

Just had a call from my consultant yesterday and I've got a cancellation lap Monday 07.30am...I actually cried!You think i'd been given two free weeks in a 5* hotel in Ibiza!!

He's fairly certain Endo has returned and I will have excision surgery on Monday if they find anything in there.I have had several scans to rule out a return of anything sinister.

I'm more worried that they find nothing but, know doubt there's a tonne of adhesion's.He said whilst I'll be monitored over the next few years if he finds nothing I have to have a colonoscopy and be referred to another specialist.

I joked that perhaps he left his Rolex in there during the last op!!You have to stay positive which is damned hard I know!

Do hope you get your appointment soon. May I ask if they found Endo during the last laps?

Best wishes to you Clare xx

[Gwen172 in reply to CJR99]

Hi Clare, thanks for replying. It seems it’s a postcode lottery!! I am in west wales but would not be referred to Cardiff which is a BSGE centre so I had no choice than to go privaThe. The nhs as we all know is terribly under funded and don’t think they class endometriosis as a priority. Though if they had to put up with all that goes with it I’m sure they would. Even then i5 is surgeon dependant. My 2 previous laps where before hysterectomy so it’s been over well over 24 years. God knows what they will find. You made me laugh with the Rolex. 😂 I have often thought that something went wrong while being operated on. Funny what goes through our minds.💩. I am being referred to Liverpool women’s hospital. My gp doesn’t seem to know much and said no endo doesn’t come back!! Well let’s wait and see I thought. Not very helpful at all. Thinking of changing practice after this. It’s so hard to find an understanding gp. Very glad to hear you are going in on Monday. Good luck I will be thinking of you. Please let me know how you get on. Wishing you all the very best. Xx

[Gwen172 in reply to CJR99]

Hi Claire, just to say thinking of you. Hope yesterday went ok and the wind isn’t too painful. Even after all these years I remember the pain of that!! Let me know how you are doing when you feel like it. Take care. Xx