Hi, I'm new here

I had been diagnosed many years ago, with IBS, endometriosis adenomyosis and possible IBD or early crohns if that makes any sense. I control my intolerance's with eliminating the foods or drinks that cause problems. Noticed it first when I was pregnant with my first that MSG became an issue. And been adding as I go. I am currently following a strict regime to see if it helps with what I believe is a latent endo flare up despite inactivity for 11 years post hysterectomy. I've probably lost most peoples interest now. Last night I had an episode from bell peppers, luckily I still have my dicetel and my heating pad , peppermint tea and gas x. I was up from 3 am -8 am in pain. Luckily I don't work as all these ailments have had me retire at age 33. I am 50 now.

I was wondering if I had my appendix removed if that would make me less intolerant of foods. I'm expected to have a laporoscopy approximately in March to determine if it is the return of adhesions ect. like my history would suggest., so if anyone knows, should I opt for removing it at that time?

I had a lot of peritoneal cysts and from what I read the ovaries produce this. Just find it interesting that so many women with endo also get diagnosed with IBS so I wonder if there is also a food sensitivity thing that can aggrivate the peritenium and produce a fluid that activates the ovaries into creating more estrogen and thus creating endometriosis? (things you can't say to a specialist)!

I watched a documentary the other night called Food Matters that talked about Angiogenisis,(blood vessel growth) excessive and insufficient and all the diseases that go along with both. The purpose of the documentary was to explain how we can eat ourselves healthy. And I'd like to do that, problem is even a lot of the good foods on the list I have become intolerant to.

It's worth a watch though.

7 Replies

  • Hi I'm no expert but what I don't understand is you say ( things you can't say to a specialist ) I believe in saying and asking every thing you want to,it's your body you take charge. Anything you don't understand Google it learn about it then write a list to ask your specialist . People on these sites can only give you there experiences, but all our bodies are not the same. I really do wish you Luck as I know only to well how frustrating it can be when your unwell. ( and don't understand all there is to know ) TAKE CARE.

  • Thanks Gemini71,

    I appreciate your candor and you're right. I think there is still a lot to be learned on the subject, and perhaps maybe as far fetched as my speculations are there will come a time when it is discovered as a cause. I do Google, a lot. But I also find that there is research proving theories that specialists still have not accepted. For instance the endo invading the sciatic nerve. There's plenty of respectable articles proving it exists and from forums I have discovered there are women who have been treated surgically for such. I am going to take your advise and dig deeper and next time I meet with my specialist ask if this can be investigated at the time of my lap. I guess I'm a little skidish because the last specialist I met with that absolutely refuses to treatsurgically endo via surgically made an example of me in front of his student intern. Strenuously suggesting the theory of the placebo effect of laporscopic surgery. It is intimidating.

  • Hi, that's exacly what these ( men in white coats ) try to do intimidate because they can't have you telling them something they don't know. Most of them won't think outside the box, so when you get a good specialist that is willing to take some of your suggestions on board,there worth there weight in gold. I've spent years doing as I'm told untill I got to the point where some of my problems have been caused by professionals. About 6-7 yrs ago my husband had to make a 999 call out for me because I had past out and I couldn't breath ( I have ephesema ). This was about 10pm my family was told I would not see the night through,at the time a gastrologist I was seeing was in the Hostpital he came up to my husband and asked him what they should do for me,now this to a man with no medical background plus deverstated because he thinks he's loosing his wife is rediculuse to say the least. When the head of the respiritary team came to consol my family by telling them there was nothing they could do, my eldest son ( who don't hold his tongue ) Asked if I was on a life support machine, he was told no,so when he asked why,he was told they didn't think it would make any difference , so he said what you got to loose. 30mins later they had put me on one telling my son it was there decision not his. Since then I've learned to fight for all I want and if I'm not happy with one specialist I'll ask to see another. Sorry to have ranted on but I was just trying to give you an example. Don't give up untill you are happy with your care we know our own bodies and sometimes we also know what's right for ourselves. Take care and stamp your feet. Here's a Big Hug to help.

  • Thank you for sharing that story Gemini71,

    I was very moved and had a good cleansing cry. How arrogant for them to tell your son it was their decision not his! I wish I could be more assertive, if it were for someone else I think I would be I don't understand why I have trouble standing up for myself.

    Thanks for the hug, consider it reciprocated.

  • Hello -I had many painful years of endo but now through the menopause and am left with chronic IBS. You seem very stressed about your situation and I am so sorry that you have so much pain that said Gemini is right we are not experts but can only give our life experiences and opinions. My opinions are if there is nothing wrong with your appendix leave well alone. I feel you need to find out if your main health problem is early Chrons/IBS or endo lesions/scar tissue and where they are situated. Your endo lesions and scar tissue if stuck on the gut(mine is on ascending colon) can cause pain and spasms. You are younger than me and had a hysterectomy early so are you on HRT?

    All the above needs to be discussed with your GP and I wish you well, let us know how you get on.

  • Thanks Linley,

    I appreciate the concern. I still have my ovaries so no hrt needed. When they did an MRI to see if my pain was bursitis of the hip they noted I had bilateral ovarian cysts. That's when I felt I wouldn't't need to prove my point any further, that it was a gyne issue causing my pain. But not so. Despite all my history I still had to persist to find someone willing to listen. I've read articles intended for medical professionals only about how despite findings of adenomyosis, if the patient is still of child beating age hysterectomy should not be suggested due to the psychological nature it can have on the patient. If only they could see inside our world. The stress we endure. Trying to maintain normalcy. Trying to maintain a carreer , motherhood, sexual intamacy, trying to not be effected by pain, depression, acceptance of not being capable of commitments we may not be able to carry out. I was ready to let my uterus go without question, I hated being denied care that I needed because of my inability to assert myself. And even at age 50 I find the industry has not changed since my struggle all began.

  • It is such a shame that our NHS cannot give us the time & treatment we deserve this irks me immensely. A friend of mine got so fed up with being" ignored" that she saw a consultant privately, they have to listen if you are paying! I do wish you well and keep in touch via this site

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