Deep Infiltrating Endometriosis - Endometriosis UK

Endometriosis UK
45,560 members38,448 posts

Deep Infiltrating Endometriosis

Hidden
Hidden
14 Replies

I've just had a laparoscopy carried out last week, which I'm recovering well from but had a mirena coil fitted to help with the heavy painful periods. They have said that I need to give it at least three to six months to settle down, but have been getting really bad period pains which normally sub-side after about an hour but do have to take pain relief to help. Can anyone tell me if this is normal?.

I've been advised that I will need a full hysterectomy which will include the removal of ovaries as well, so will go into surgical menopause and will have to take HRT. I have another consultation in February to find out more etc..

14 Replies
oldestnewest
Tboag

Hi, is your hysterectomy for endo, or another reason, I've had a hysterectomy for Adenomyosis and still getting endo pain, due to my endo not being dealt with pro palsy by a specialist, a hysterectomy for endo is not advised from most specialist,

Are you being seen a a BSGE specialist centre or by a gyne, ???

How old are you, you will need HRT and this will add back the estogen that your body will lose, this is to help protect your bones amongst other things, but also add back to the endo, especially if it's not excised fully from all areas,

Good luck xxx

1 like
Reply
Hidden
Hidden
in reply to Tboag

The hysterectomy is for the endo plus I have fibroid which need dealing with as well. The Endo is attached to certainly organs which need dealing with so not sure if they will be doing all the fibroids at the same time, but will hopefully find out more in February but have got a call into the consultants office. I'm 50 next May so will be on HRT for a couple of years I expect.

I'm being dealt with by the gyne clinic at RSCH.

The mirena coil seems to be causing me more problems at the moment, but just go to give it a chance I suppose!!

Reply
Tboag
Tboag
in reply to Tboag

I would get referred to a specialist on the BSGE list, I Didn't and now wish I had, I'm under one now, he is sending me for MRI,

My hysterectomy hasn't helped with my endo at all

I hope you have more luck, but they must complacent full excision surgery, at the same time, otherwise, it will carry on causing symptoms,

Xx

Reply
Hidden
Hidden
in reply to Tboag

I'm afraid I cannot afford to go private, so will have to go with the flow with our wonderful NHS as never had problems with them in the past. Good luck with your treatment as well.

:-)

xx

Reply
JeanOsborne
JeanOsborne
in reply to Hidden

Hi Linda the specialists on the list Tbaog is talking about are nhs they are just properly trained with endo. Look up Lindle on here , she can direct you on how to find one

Reply
Hidden
Hidden
in reply to JeanOsborne

How do I find Lindle on here?

Reply
JeanOsborne
JeanOsborne
in reply to Hidden

I'm not sure how to put a link on but if you look through some of the posts you find her name on some responses just click on her name

Reply
Tboag
Tboag
in reply to Hidden

Hi Lynda, the BSGE list, is a list of surgeons through the nhs, that are more skilled in the endometriosis excision surgery, unfortunately I couldn't afford to go private either, and I agree the nhs is a wonder thing,

Have a look at a lady called Lindle, she has written posts regarding specialist, there is a nhs contract that states we ladies with deep endo or rectovaginal endo SHOULD be referred to one of these centres, unfortunately most of the medical profession do not know these centres exist, this being the case with my GP, but under Nhs our choice, we can ask to be referred,

My only worry with you, is the same thing will happen that happened to me, I see a very good gyne surgeon, and he did a great job with my hysterectomy, but I fear, he hasn't excised all my endo and that's why I'm still in pain,

Good luck, xxx

Reply
LauraB_04

Hi,

I can't comment on the Hysterectomy part of your question, but I also had a Laparoscopy just coming up 2 weeks ago & Coil fitted - I'm also getting pains still, which I did get after having my previous Coil fitted (earlier this year) - they did settle down some after a few weeks, so hang in there! My new best friend is an electric Heat Pad - it's been my saviour for the last week or so!!

Hope you don't mind me asking, but are you bleeding at all still?? I haven't stopped yet since the op, but trying to think positive & hope it's going to hurry up & stop pretty soon! :-s

Hope you keep feeling better x

1 like
Reply
Hidden
Hidden
in reply to LauraB_04

Hi, thanks for your positive response.

I've been spotting every day since it was fitted on the 21st December, but not had a full blown period yet. My normal cycle would mean my next period would be due on the 13th January, so we will just wait see what happens. I trying to combat the pain with paracetamol and ibuprofen which is what the hospital prescribed.

Can I ask why you had one fitted and why you had to have it changed so quickly?

Thanks for your feed back.

Reply
LauraB_04
LauraB_04
in reply to Hidden

That's a bit of a comfort then - will keep my fingers crossed and be patient! My cycle is a complete mess, as I had been on Norethisterone since around April/May to stop my bleeding, so if I make it right from when I came off that mine should be due 2 days after you! Yes, same here, but I've been having Codeine too, which does help!

I had my 1st one fitted at my 2nd lap for endo back in June to try & control my cycle (which has nearly always been haywire) & near-constant bleeding, but from the day I had my 2nd op the pain really never went away, so I was firstly given a course of Zoladex injections (which at the time didn't appear to help a lot), but Gynae thought that the Mirena was perhaps he cause of my pain, so that was whipped out back in October, but unfortunately made no difference, so hence I had another one fitted at my most recent lap!

They do say it can take 6 months for the Coil to settle things down, which does seem a rather depressing length of time, but will certainly be worth it in the long run if it does it's job :-)

1 like
Reply
HiddenThis reply has been deleted
Hidden
Hidden
in reply to Hidden

I'm being treated at the Royal Surrey in Guildford, so I'm a bit confused by your message because these guys must know what they are talking about and what treatment is going to be the best course of action. I'm in the process of emailing them tomorrow with a list of questions and concerns I have.

I do feel that the internet is a good tool to a certain extent but then it can be misleading and very negative.

I will be having a full hysterectomy plus the endometriosis excised too, plus I have fibroids which at present unsure where but do have several one begin large. I have a nodules close to the rectum as well BUT because I've not spoken to anyone, as of yet, I do not know the full extent of the treatment going forward so I would personally like to go with the advise that they give me.

It is all very scary and feel quite alone at present but I will be attending a support group held at the RSCH later this month.

Reply

You may also like...