So much pain don't know where to turn πŸ˜” - Endometriosis UK

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So much pain don't know where to turn πŸ˜”

Joely21 profile image
Joely21
β€’24 Replies

Hello ladies, i'm looking for some advice even if it's the smallest amount I'm really at the end of my tether :( I have constant tummy pains day in day out that affect my daily lifestyle as they are so bad, I also have been bleeding for the past 9 months now during this time I have bad episodes where the blood is what I can describe just 'leaking away' I visited my gynaecologist who suggest having the injection I'm due to have my 2nd one next week the first one made no impact whatsoever is this normal? I pleaded with my GP to enable me to see my gynaecologist sooner but now it's turned around my appointment has been pushed back further by a month. I suffer with severe constipation I have done so for the past 2 years where I can't open my bowels every single day I cry in pain from this. I am just wondering if anybody can give me any tips to try and make day to day life that bit 'easier' thank you all xx

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Joely21 profile image
Joely21
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24 Replies
β€’

I really feel for you. I'm also in pain 24/7 and was told by everyone it can't be Endo as I would only have pain around my period, but I know other suffer the same as me.

Keep pushing to see someone as soon as possible.

Have you found a local Endo specialist near you?

Has the doc given you anything to take for the pain?

X

Joely21 profile image
Joely21β€’ in reply to

I had a lap June 2015 where they discovered endo but since then everything seems to be 10x worse :( what's a local endo specialist sorry to sound silly I just go through my specialist that i see at the hospital my gynaecologist, I have other health issues so I'm on lots of medication so they haven't really given me anything for my endo :( x

β€’ in reply toJoely21

I'd defo ask for something for the pain! That will most likely be trial and error till you find something that helps tho!

Check out bsge.org.uk/ec-BSGE-accredi...

If you have Endo you need to be seeing someone off this list, most gynes don't know enough about Endo to treat it properly. I am still fighting to get refereed to the right people, but if you have had confirmation you need to see one of these guys!

X

Joely21 profile image
Joely21β€’ in reply to

I am taking 3 types of pain relief already for other health problems, ah perfect thank you so do I just contact them and go from there sorry I'm new to all of this xx

β€’ in reply toJoely21

I contacted my local place and was told I needed to be referred by my doc. Worth giving them a call and see what they say!

X

Joely21 profile image
Joely21β€’ in reply to

Perfect thank you so much for helping me it really means a lot, have they helped with your pains? X

β€’ in reply toJoely21

Still fighting my doc to send me 😟

So far I have only been referred it a general gyne and he's done scans and booking me for a lap to take a look around inside.

If the lap confirms Endo then I'll go back to the doc and insist on referral to my local centre!

X

Joely21 profile image
Joely21β€’ in reply to

Oh bless you it's so frustrating πŸ˜” I remember when I was 13 a doctor told me then he thought I had endometriosis, 10 years of arguing/pushing they finally carried out a lap which confirmed it! I'm not allowed to have anymore laparoscopys which is frustrating, when are you booked in for yours? I really hope they help you soon x

JeanOsborne profile image
JeanOsborne

Hi can I ask what injection it is? Regarding the constipation ask your GP for Laxido I've been on this for six months due to the fact that I just couldn't go at all and it really helps.the bleeding is it constantly or more like spotting?

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

I am sure it is prostrap sorry I'm not 100% sure, I have been taking laxido for nearly a year now and I just cannot open my bowels the pin is unbearable πŸ˜” The bleeding is constant unfortunately it's really getting me down and worrying me now thank you for replying x

JeanOsborne profile image
JeanOsborneβ€’ in reply toJoely21

Hi Hun I think you need to get GP to investigate you bowel further. You shouldn't have to live like this. If the pain is that bad Hun go to a& e.

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

It's horrible it really is I get so desperate like I need to go and then when it comes to it cry because of the pain and being unable to πŸ˜” Do you think it's connected? I went to a&e and they wouldn't see me as its an ongoing health problem πŸ˜”

JeanOsborne profile image
JeanOsborneβ€’ in reply toJoely21

I don't know . But it doesn't sound right to me. All I can suggest is you go back to GP and refuse to leave until they help you. It sucks I know.

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

It's horrible isn't it πŸ˜” Just so painful would love to be able to open my bowels and feel 'human' again

JeanOsborne profile image
JeanOsborneβ€’ in reply toJoely21

I Hun I've been having a think . Have you had a colonoscopy? It's where the use a camera up your bum to see what's going on. It's uncomfortable but not bad. I'm wondering if maybe you've got a blockage which is why you can't go even with the Laxido.are your stools (when you do go) thin?or are the impacted? If there is a blockage then that can cause an awfull lot of pain.

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

I had one of them at first and it was fine but that was two years ago before all the major problems I may have to see if I can have another one, they are very impacted and it's only like once a month I am able to pass them it's like a pebble sorry if that sounds horrible x

JeanOsborne profile image
JeanOsborneβ€’ in reply toJoely21

Hi Hun I'd check with GP but I think you can take 6 sachets of Laxido for impacted stools. This may help to clear things out a bit and improve things slightly. But like I say check with GP first. I would definitely push for another colonoscopy though as something isn't right. Take care Hun.

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

Thank you so much for all your helpful responses I will be sure to let

You know if anything happens x

JeanOsborne profile image
JeanOsborneβ€’ in reply toJoely21

Hi Hun I'm having my hysterectomy tomorrow so if you don't hear from me I think I should be home on Sunday. Take care Hun.

Joely21 profile image
Joely21β€’ in reply toJeanOsborne

Good luck for tomorrow will be thinking of you take care x

Siana92 profile image
Siana92

Hi Joely! I had this same issue with laxido when I first used it as one off that I had at home because it'd been 3-4 days without going and was getting so fed up. I had hurrendous diarrhoea from it and loads of blood (very scary) plus was in even more pain. A&e came round as I was so worried about it. So I stopped using that and got put on lactulose by dr which was working quite well at first but still agonising to go with blood most times but not as much. It's gotten so much worse recently even if I've been going a few days in a row the pain is just unbearable and still struggle to go fully constipated or not.. The dr gave me Senna tablets last week to take as well as lactulose and I've weirdly been more constipated and in more pain everywhere almost being reduced to tears.. I literally dread it every single time. Have you tried any other forms of laxative? It's horrible isn't it... I don't know what else to do until my lap date comes through. Hope you can find a solution! Xx

Joely21 profile image
Joely21β€’ in reply toSiana92

I can only sympathise with you as it's horrendous it really is, I feel like such a wimp as it is so painful sometimes all I can do it sit doubled over wishing I could go, they gave me laxido lactulose, movicol and Senna and all of them like you say just made it worse and I felt like 'why am I doing this' the most scary thing like you say is the blood as it makes you think what is happening, I really feel for you and hope they are able to help you soon 2 years of not being able to open my bowels is really getting on top of me now I am sick quite often as that's the only way I can get it out of my system πŸ˜” X

Karen9 profile image
Karen9

I'm sure you know this, but with all the constipation remedies mentioned if you don't take enough water or are dehydrated they will make things worse. It might be worth asking to see a continence nurse or try phoning the bowel foundation, they will help with constipation issues. I found the nurses really helpful and they take the problem seriously. They not only give advice on laxatives etc but they can also recommend solutions like anal irrigation systems, which aren't fun to use but are so much better than the pain when nothing else is working. I hope you find something to help soon. X

tasnim profile image
tasnim

Girls try drinking isabgol you will get this at any Asian super store,good for constipation

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