End of my rope.

[Emmahuh]

After five years of being bed ridden I have been diagnosed with ibs as well as adhesions on the bowel. I have also had endometriosis removed from the bowel. Has anyone experienced this? I'm only 23 and I have had to put my whole life on hold. Any help will be appreciated.

[bel_hope]

Hello Emma, I can only say that you are a strong young woman. IBS is a condition that many doctors say it does not have a cure, but I got healed. After many test performed, my doctors just gave up giving me an IBS diagnostic. I went to a doctor with an homeopathic background and he prescribed the easiest treatment, the squeeze of a raw potato every morning before breakfast. I don't know if that did it, but it sure helped. He suggested to stop taking the Protonix and the rest of the stomach meds because they were actually damaging the walls in my stomach. I did and even though I have my stomach issues sometimes it is not IBS anymore. I am able to eat without having to run to the bathroom. I never had endometriosis, just painful menstrual periods, but I can assure you that your IBS issues are most likely based on your other medical issues. Our gut is a powerful organ, and all our emotions and concerns are felt first in our stomach. I you believe in God or any higher go to that for believing for wholeness. Also, I started doing EFT(Emotional Freedom Technique also known as Tapping. It sounds crazy, but it is crazy effective for our mind. Our bodies are connected to our mind, so what you believe, you will receive. Please keep me updated!

My thoughts are with you.

[Myrtle81 in reply to bel_hope]

How did you find the right doctor?

[Streetsofkenny]

Hi Emma,

I began having problems with my periods at age 14. I was told by my male gp that it was normal for women so I put up with it. suffice to say it got worse. Throughout my 20s I lost jobs due to it and I was told that my bowel issues were due to ibs. When I was 28 I experienced a sharp pain in my left side and a scan revealed a cyst on my ovary. I was told surgery was needed. The surgery was 4 and a half hours long I was told the cyst had been successfully removed but that I had stage 4 endo. It is attached to my bowel, bladder, ovary, Fallopian tube and my pouch of Douglas is obliterated. To say I was angry at my gp is an understatement but I was also relieved to know it wasn't in my head. I'm 36 now and like you have suffered due to this terrible disease. I'm due another op soon and hopefully this one will help to get rid of most of it.

If I could give you advice then I would say don't accept it as normal but at the same time try not to let it define you. Easier said than done I know. Try and get referred to a top centre of excellence hospital. I'm under Liverpool women's. It HAS to be a centre of excellence. They're the only ones who know how to do the excisional surgery.

Dietary wise, Some people have found a bit of relief with a gluten and wheat free diet.

Me personally I've found a bit of relief with vitamin d and a quality cod liver oil. All taken on a daily basis. Fasting intermittently may also help as fasting has been proven to lower inflammation.

God willing you'll get the relief you need.

[Emmahuh in reply to Streetsofkenny]

Thank you so much for this. They have said that my endo is what has caused my ibs but I only have the symptom of pain. I to have had cysts removed so I'm in constant fear of them returning. They have given me a long list of things to try the first one being laxatives. Have you tried anything like that? So far it just seems to be putting me in more pain. Thank you so so much for replying it's made me feel like I'm not alone.

[Streetsofkenny in reply to Emmahuh]

Hi Emma,

I know what you mean by needing laxatives. I'm usually constipated until a couple of days before my Period. The reason behind this is the sudden change in hormones with has a natural laxative effect. This is a blessing as I've experienced Periods when I'm constipated and the pain is unbearable.

As for laxatives for you, I would argue that maybe you need to start off slowly. I can imagine your gp has given you specific medication for this but this could be too harsh for you. GPs forget that some women with endo have adhesions on their bowel. So anything that speeds up bowel motility will cause pain.

No doubt water is all important and anything less than 2 litres a day will cause you issues.

I'm about to start on a specific diet myself to help the constipation.

It consists of eating baked potatoes, frozen mushy peas (high fibre content), prune juice, a spoonful of quality olive oil and plenty of water. The reason I'm eating these specific foods is that I've found in the past they've helped. You may find different foods help you.

As for supplements I've heard magnesium citrate is good but it has to be a good quality one. As with all supplements pls check with your Gp that you're OK to take them.

One other supplement I've found useful is Co Q10 but I would advise you to start off on the lowest dose possible as I started mid range and experienced diarrhoea with it. This is the type of supplement you may only need to take when needed. As you're so young I doubt you would need it every day. Once again though pls check with your GP that you can take it.

Have you tried a supplement called fibrogel (I think that's what it's called)? It's quite gentle on the bowel but can take a few days to work.

These are just my suggestions. They may not work for you.

I truly believe that if my bowels weren't such an issue I'd be able to cope better with the endo.

Don't ever feel like you're alone. You're not. There are millions of us around the world, on forums just like this.

Please get in touch anytime.

[Emmahuh in reply to Streetsofkenny]

Thank you so much for the advice. I think I'm going to take a look at the fibrogel. They have put me on piccolax and it's creating so much pain that it just doesn't feel right. In two weeks time I'm cutting out wheat and dairy to see if that helps. Dr said not to try everything at once because if something works we won't know what it is. I have made a few friends with endo and as a genral sensuous I have found endo in the bowle seems to be a lot more painful. This is because not only do we get it when we have a period but also everytime we have a poop. The adhesions are a nightmare. I've had fout operations to remove them but each time more seem to come back worse. Now they won't perform anymore surgery for fear of making them worse. Thank you for replying, I always try to keep positive but recently I've been finding it difficult. You are the first person I have talked to that has understood how it feels to have both the conditions co existing. I honestly can't express enough how much you have helped. X

[Streetsofkenny]

Hi Emma,

No worries kid. Anytime.

That supplement is called Fybogel. Sorry, I wrote fibrogel, I've got fibromyalgia so I've got the word fibro on the brain!😄

Can I also advise that if you manage to treat your constipation that you consider a pain modifying treatment for your adhesions.

Adhesions are a bitch because as you've stated, the surgery you have to remove them only end up creating more. Your doctors are probably right in saying they are reluctant to operate again. Unfortunately there aren't really any meds you can take to treat internal adhesions however there has been some research into whether certain meds such as amitriptyline/nortriptyline or gabapentin/pregablin can help to diminish the pain that adhesions cause. this is something you may want to discuss with your GP once you get your bowel issues sorted.

God willing you're starting out on the road to symptom relief.

All the best and may God bless you.

X

[Emmahuh in reply to Streetsofkenny]

I'm on amitriptyline atmosphere. Its helped so much. I went out and got the fybrojel and so far it feels a lot better than the other stuff. Sending prayers and good vibes your way 😀

[Streetsofkenny]

Nice one kid. Right back at ya!👍😀