Back to square one :(: Just wanted to write... - Endometriosis UK

Endometriosis UK

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Back to square one :(

Eggcustard profile image
13 Replies

Just wanted to write to see if other have similar feelings. I have posted a few questions in the past and having recently had lap number 3 which finally led to a diagnosis thought things were moving in the right direction.

I though my pain had improved but it hasn't, I am really frustrated and don't know what the future will hold.

I have pain which is always there and worsens when I walk around I also then have what I would call the period type cramping pains. Following prostap injections my period has disappeared, so no cramps at the mo, but still have the chronic pain.not being mobile is a nightmare, can't walk far etc. how do people cope if they aren't mobile? Are there any other members who can't walk because of all this? This is what is I am finding the scariest thing.

I am very luck to have a daughter but am now accepting I will not have another child.I am completely skint as I can't work at the moment.I have lost friends as they don't understand. I am very lucky to have a great partner.

I think next stop will be the pain clinic but to me that's admitting I will always be like this, but I do need help manging pain. Tramadol just isn't doing it.

Any advice from members who have been where I am now would be greatly appreciated. I built my hopes up that the last surgery would work and now feel really down. My chronic pain is caused (I think) by adhesions where I had a dermoid cyst and everything stuck together so diet won't improve it either.

Any ideas anyone? Mainly on managing pain but also generally not going round the bend!!!!!!!

13 Replies
groberts90 profile image

Hi, I just wanted to say I totally understand where you're coming from! I too am at the stage where it's zoladex/prostap or I can barely function and I too have chronic pain. Tramadol eases things but not 100%.

Something I would definitely recommend to you if you haven't tried it already is a TENS machine. You can place the pads where you feel the pain and they have a direct effect - it's wonderful! The one I have is from boots and is honestly the best £40 I ever spent. It's really helped me keep mobile as I use it when walking around.

Having been to Pain Clinic myself I would recommend discussing drugs like Gabapentin or Pregabalin with your GP before you go as these will probably be suggested first!

As for coping - is there a local support group? I don't know where I'd be without mine.

Hope this helps - feel free to ask more questions/chat :-) xxxx

Eggcustard profile image

Thank you for the reply, I don't think I have a local support group, maybe I will start one! I did ask for pregablin a while ago but read the leaflet and it scared me off so I haven't tried it yet, think that will be the next thing on the list.I tried amatriptaline but think maybe the dose was too low. I was really waiting for the last lap as I was convinced it would work but it hasn't. I have decided to swallow my pride and try to sign up for ESA as financial worries on top of everything else is rubbish.

is your chronic pain from the adhesions? I need to go back and see my gynae and see what he thinks but it's common sense to me that if I have ovary and cyst remnants stuck to my bowel, which was also stuck to the nerve in my leg, this might cause some pain! last time I saw him the gyane said my pain was a mystery!

Will also look at a TENS machine thanks for that. When you stopped the prostap how long did it take for your periods to come back? I am now being told that I may be in permanent menopause because of the injections, the menopausal symptoms I have are awful and the doc said I can't have HRT because it will stop my periods from coming back, I don't know if this is true, going to diff GP on Thursday so may have more answers then. None of the GPs at my surgery seem to have a clue about any of it which doesn't help.

Sorry for the long reply,I have so many questions and no one to ask!

Thanks for the support xx

fresh17 profile image
fresh17 in reply to Eggcustard

Hi, I'm new on this site,and really interested in your problem as it looks the same as mine. I took the second lap 9 months ago,because the pain spreaded to my right back pain and right leg. After that I got zoladex,but on the 5th month after last lap the pain came back. Almost as severe as before. Now my gynaecologist gives me morphine,after he diagnosed me with deep endometriosis.. I wonder why he didn't come up with the DE diagnose before he did the second lap. Now I have to think about the third lap to ensure if there is really deep endometriosis. But I get frightened that the next lap will give no improvement just like before:(

JEWELS profile image

Hi .. This Definately seems like adhesion pain .. It's very hard to treat as soon as they cut them away they grow back.. Try acupunture it really helps with the pain... I would ask your gp to refer you to a pain clinic ... They will Definately help you and supposed to be really supportive xxx

Eggcustard profile image
Eggcustard in reply to JEWELS

Thanks for the reply. I think that the pain clinic is needed now, I have been in permanent pain for 12 months. hopefully they will help me to control the pain and get things back on track.Good tip about the acupuncture, another option to try! Thanks it's good to know there are still things to try out.

HayleyDawn profile image


This is so crap isn't it, it sounds like mine, I have constant chronic pain in my lower right side and then everything else on top. I couldn't move around like you and I'm a self employed massage therapist! My doc has now put me on Pregabalin and like you I didn't want to take stuff as I didn't want to admit that this was it but I also released that I need pain relief for a quality of life, that's the card I have been dealt. the Pregabalin has helped and I move around now and work.

A week today I'm going in for my 2nd lap and to fit a merina coil which I'm still not sure about but I bleed on the injections, so they didn't work for me.

I would def change docs as if you have HRT then you start to bleed again and that's what's brings the endo back.

Where abouts do you live? I don't have a support group either but I have found a closed group in Facebook which are great. You could join?

Just know that your not alone, that has helped me

Good luck at the docs :) x

Eggcustard profile image
Eggcustard in reply to HayleyDawn

Yep, it's rubbish!! But like you I am coming to the realisation that this is the way life will be and all I can do is learn to manage the pain in the best way possible. I am still going to try surgery again for excision I think but I am really doubting that the adhesions can be sorted. I will ask about pain clinic to try to get things back on track.

It's terrible that people suffer like this when everyone thinks its just about "period pains".

Thanks so much for the reply, like you say it's good to know we are not alone in this. I am glad you have found a way to manage your are you finding the pregablin?

groberts90 profile image

I'm not sure where my pain is coming from. All I was told is that I have superficial implants all over my pelvic cavity - too many to safely destroy them all. That was July 2010 though and I have struggled to find good control since and my pain has changed so I wonder if my endo has too?

After I stopped zoladex last year it took a good few weeks to start bleeding, about 7 I think. I started on the pill straight away though. The pain started getting bad again very quickly and I was so gutted

Eggcustard profile image
Eggcustard in reply to groberts90

Thanks very much for the reply, I am sorry to hear that you are still in pain. People have suggested a few good things to me like tens or acupuncture, have you tried anything like that, have you been to the pain clinic? Seems that is what we both need. I hope things improve for you x

Thorbs04 profile image

Hi I really understand where you coming from I'm in agony everyday of my life with terrible pelvic and leg pain all the time, I'm still working but got to take time off work sometimes I've already had 1 lap which they found endo on my ovaries, bowel, kidneys and fallopian tubes also my bowel was stuck to my pelvis but I haven't been any better, also we be trying for a baby but no luck had 1 cycle of IUI but it didn't work so going through another 1 on June 26th and waiting for another lap but it's 3-9 months waiting list. I really want a baby but it's just not happening

Bluebird87 profile image

Reading your post sounds exactly the same as me I had to check it wasn't me that wrote it. Except your luckier then me I don't have kids and can't because of this.

I work but struggle and I have to sit down most of the time, I can't afford not to work and to top it my job are bastards excuse my french they are not understanding and making my life hell.

I cant walk far at all I get to point I have to use a wheelchair if ones available in stores. I have a partner like yourself and im lucky he stands by me and basically he's my carer as I struggle to do alot things.

Don't ever feel your alone.

Ive had pain injections and they don't work and im waiting for pain psychology, ive had several ops but it gets worse rather then better. Im on oral morphine and fentanyl patches the drugs and dose im on is same as cancer paitent but it doesn't take the pain away it eases slightly but not enough to lead a normal life.

Eggcustard profile image
Eggcustard in reply to Bluebird87

Hi, so sorry I didn't reply to this at the time, sounds like you are having a crap time of it too. Thanks for taking the time to let me know I'm not alone cos it really feels like it sometimes. I hope you are having one of the better days today x

Bluebird87 profile image
Bluebird87 in reply to Eggcustard

Its ok hun. Yeah its been hell, currently off work cos of having bad time with endo.ended up blacking out and falling down stairs :-(.

Yeah I totally agree sometimes it feels like im alone but remember if you ever need to chat or rant just message, its nice to talk to someone who understands exactly what we are going through.

U are never alone, I hope your having a better day hun. Keep your chin up xx

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