I just wish the pain would stop! - Endometriosis UK

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I just wish the pain would stop!

Mummy1982 profile image
15 Replies

Hi everyone.

Having a bad day today, I have been in hospital for 11 days and now been home for 3 days.

During my stay they they gave me 4 enemas and various amounts of strong laxatives to clear my bowel because it was blocked.

I also had a flexible sigmoidoscopy and they said my bowel looks all good but they do agree that something isn't right,so they are going to a capsule transit where they follow it by taking xray to see where the capsule is in hope to see what's going on, I'm a bit scared as I'm not aloud to take any laxatives for 7 days.

I am also having a proctogram? Not really sure what that is need to try and find some information.

Has anyone had any experience with either of these procedures?

I am in so much pain now i am taking a high dose of oramorph to help but even that doesn't take it away it dulls it, I'm just so fed up of being in pain all time, I'm sick of myself feeling like this I want my life back.

I've got a appointment with the endo consultant mid June and the others are at the beginning of June.

I was so hoping that they would see something on the flexible sigmoidoscopy because I honestly don't know if this pain is the endo and Adenomyosis or my bowel or both? It constantly hurting on my left side pelvis, back and leg all the time.

I have been refered to the pelvic pain clinic and physio whilst in the hospital but no appointment as yet, but she put me on pregabalin to help Because muscles in back,pelvis and thigh on my left side are in spasm twitching all the time and I can't stop.

Sorry for the rant I've just looked at how much I have put in, I really would appreciate and advice or to hear from anyone who has experienced this or tell anyone who could give any advice I feel in such a state xx

Jo xx

15 Replies
Tboag profile image

Hi Jo, sorry that they havnt really found what's causing all this pain, I don't no what to say really, just that like you said it's so hard to know where/what the pain is from, I'm thinking that too, ive got my date for hysterectomy,18th July, but keep thinking what about if gyne surgeon hasn't removed all the ENdo and its that, that's cauding my probs not the adeno, and that the hysterectomy will be a waste and not help,

I don't know, I think we just have to trust that we have good docs on our side,

Are you stuck in Doris in pain all day, I think that's the hardest thing to deal with.

Messaged me privatelly if you want, good luch and let's hope the time goes fast


Mummy1982 profile image
Mummy1982 in reply to Tboag

Thanks hun so pleased you have you date that really isn't long, how are you feeling about that ?

A lady from the pelvic pain clinic came to see me whilst I was in she put me on the pregabalin and she advised me to have the prostap injections because that is the only way they can be sure that it's my uterus is causing my pain. So I'm going to try them because it is the only way I will know.

Also hoping they will out what is going on in my bowel with the other appointments.

I'm just to scared that if I have a hysterectomy and I still have the pain what's the point.

I am literally struggling to walk I'm so weak from being in bed for 11 days mostly sleeping .

I just want to be normal again it's just tearing me apart I am 32 not 82 but that's what I feel like.

Feeling so sad 😣 .xx

Tboag profile image
Tboag in reply to Mummy1982

Aw you poor thing, I know what you mean, I can't bloody wait, it better bloody work, lol, if it dosnt then I'll no it is the endo and I would then need to see a endo specialist, and to be honest, my adeno is quite advances so my thinking is if it isn't that that's hurting, it probly will one day so,

Hope you start feeling abit better now your home hunny, sending hugs


Mummy1982 profile image
Mummy1982 in reply to Tboag

I know it's horrible. You and the other lady I speak to on here are both having your hysterectomy soon.

I feel so frustrated I've waited a year and a half in such bad pain I just want to know which is causing the most pain. I was told mine was advanced aswell they didn't even say about prostap to me they said only cure was a hysterectomy.

It was the pelvic pain lady who said she would advise me to try the prostap to see if it improves the pain.

I'm just in so much pain down my left leg, pevis area and back all the time. I said to them in the hospital if they could offer me a injection to put me to sleep I would have taken it because I don't know how much more I can take I know it sounds selfish but it hurts all the time.

I glad to be home it put it I prospective I could never do that to my kids or partner but equally this is a nightmare for then as I'm just no fun anymore I try and make out I am but I'm so tired now I struggle to do it.

I'm so pleased for you though hum I'm sure you will feel great after xx

Aurorasparkle profile image


I'm so sorry you are suffering with so much pain.

I can totally relate to how you have been feeling.

I hope and pray you get some answers. I am under a pelvic pain clinic and was there today and they are fantastic. It was one of their endo specialists who did my surgery so it's great that you are going to an endo specialist. I have waited 10 yrs to see the people I see now and they have really been a godsend.

Sending lots of hugs and good vibes xxxx

Mummy1982 profile image
Mummy1982 in reply to Aurorasparkle

Thank you for your message.

That really has lifted me to hear you say that pelvic pain clinic have really helped you.

The lady Dr who came to see me was the one who actually realised that my body was in spasm all tight up my left thigh round my lower back and pelvic are she got me on some medicine to help control the spasms which are slowly starting to work.

She also referred me to the physio and she also saw me in the hospital and assessed me and I was amazed how just going over a few moves about 3 times a little further each time drastically improved my paon and the mobility.

I'm so pleased that they are helping you 10 years is a long time to suffer hun.

Thanks so much for your reply.

Jo xx

Aurorasparkle profile image
Aurorasparkle in reply to Mummy1982

Your very welcome


Hi Hun do you think the muscles tensing up cause the spasms? When you're in so much pain you naturally tense up don't you, I feel I always have to remind my muscles to relax in my groin and legs, I'm just wondering if that tensing causes some pain? If so maybe a muscle relaxant would help? Xx

Mummy1982 profile image
Mummy1982 in reply to

Hi hun

Yes it is the tensing that is causing the spasm the pelvic pain lady said all my muscles on the left have locked up tight and it has got so bad it's causing spasms. Yes that is what she is using pregabalin for and I'm taking a high dose of amitripyline also.

At the moment I literally can't get the left to relax that's why it's hurting so much.

My stomach has been bad today with my digestion I was going to do yoga but I felt like if I bent over I would be sick.

I will try again tomorrow and hope for a better day.

Thanks for replying xx

Yoga would be good for muscles and your digestion so fingers crossed!

It's hard when you feel like crap though isn't it

I think that's what's causing the pain in my legs at moment xx

Mummy1982 profile image
Mummy1982 in reply to

Yeah I do feel some relief with yoga which I usually love finding it tough after being in hospital and because pain is so bad.

Aw hun the leg pain is so bad I really hate it, if I could remove one pain it would be the the leg pain as I feel like I'm limping 😧xx

Miwa profile image

Have they referred you to an ordinary Physio or a women's health specialist? As I remember you said they had diagnosed an overactive pelvic floor as it was in spasm. This can cause a tremendous amount if pain in the pelvic girdle region. An ordinary Physio will not be able to treat this. Make sure your referral is to a women's health. Also ask if the referral was marked urgent. If it wasn't speak to the referrers secretary and get it changed to urgent due to the levels of pain you are in. Whilst your bowel is in spasm the bowel cannot work properly to empty as the pelvic floor wraps around it and is what keeps you continent. If it's in spasm it will not allow the poo to come out as it is too tight xx

Mummy1982 profile image
Mummy1982 in reply to Miwa


Thanks for your reply. Yes it was a women's specialist I was really like in a way, because whilst I was in I managed to get the women's specialist physio, the pelvic pain unit and gastro to give me appointments.

I'm still waiting for physio, the lady did say I would be high priority but there is a big waiting list but from what the pelvic pain lady said it will be worth the wait. Just feel down because of the pain.

They said as much, that the spasming could be what is making my bowel problems worse along with being told that reducing pain killers should help but it's not a option for me at the moment as I'm in so much pain.

Thanks so much for you reply xx

Kirstiexxx profile image

I don't have any advice but sorry you're still suffering that's awful, no wonder you're so down continuous pain is horrible. I really hope they resolve this for you very soon xx

Mummy1982 profile image
Mummy1982 in reply to Kirstiexxx

Hi hun.

Thanks for your reply.

I am feeling really down the pain is so unbearable at the moment.

I feel like I'm in such a viscous circle I'm taking strong painkillers for pain as it so bad and they are saying it's making my bowel problems worse.

Just so fed, thanks for your message. I hope you are well.

Jo xx

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