not sure how to handle the diagnosis

[Knina]

Hello, I am having one of those "isolated" days. I don't know anyone with endometriosis, with which I have been diagnosed for the past 13 years. As of this February and confirmed yesterday I do not have it. Instead I have endosalpingiosis which I have been told I should treat as endometriosis. Endosalpingiosis is when fallopian tube cells are growing whenever they want. It is so rare according to the surgeon, she does not know what percent of women are affected. Not much known about that condition as well, so everybody treats it as endo. That is not enough for me.. I read that patients with endosalpingiosis have a greater chance for cancers, but my doc did not tell me that. So maybe it is not proven. I found one research about it and it is said that patients should be followed more closely. In anyway, finding someone with endo is hard enough, so I am very grateful for that forum. Finding a person with endosalpingiosis feels like impossible task. Is any of you have been diagnosed with endosalpingiosis?

In February I had laparoscopy during with my left ovary and the tube were removed due to the suspicious cyst. It was false alarm and a big relieve!

I am also trying endo diet, but it is so bland I am trying to find recipes that I like, but no luck so far. I know it is just a beginning for me and I need to be patient. But there are so many limitations. I was somewhat eating close to that diet before I started it - I have been GF already, did not like much meat, almost no dairy. But I love my cheeses! Does anyone tried goat cheese and feels well after eating it? Now I feel like eggs do not agree with me, even ones that are mixed in the food, such as crepes. I am still working on it though. Please share with me any simple breakfast recipes that you like.

I am very tired all the time, but trying to hold it together for my kids and husband, who is very understanding. I know people go through worse. My endosalpingiosis is painful, but not as much as for some of you. I have been diagnosed with ITP last year, which is rare condition as well. I think feeling of being so "rare" is hard for me:))) and this diet...help me God! Where is my cheese and wine?! :))))

Sorry for the long post!

[hb2594]

So sorry you’re going through this!

As much as knowledge is needed with what we have, unfortunately it can also scare the living daylights out of you. Try to take google info with a pinch of salt- it’s something to be aware of but you will not be that number where it develops to worse... that mantras probably one of the only things that keeps me sane on my isolated days 😂

I’ve been fine with goats cheese thankfully but that said it’s rare that I eat it 🤷🏻‍♀️

Sending you hugs & positive energy ❤️

[Knina in reply to hb2594]

Thank you! Your hugs are much needed here I will try goat cheese and see how it will work out.

[Knina in reply to hb2594]

goat cheese is no go for me But eggs are good. So happy!

[hb2594 in reply to Knina]

Glad the eggs are good!

[Victoria81]

I’ve just been told I have endosalpingiosis too! I’d never heard of it before today. Had endometriosis for almost 20 years and my docs have just had the pathology back from my latest lap last month. Haven’t had a proper consultation yet so really don’t know what it means yet. V little information about it from what I can see so far. Searching on here for some info led me to your post - you’re not alone!

[Knina in reply to Victoria81]

Hi Victoria! I am sorry to hear that, but at the same time happy that I found one person that can relate to me. I have been diagnosed with endometriosis for 18 years. Have your doctor told anything about endosalpingiosis?

[Victoria81 in reply to Knina]

I’m still waiting for my follow up consultation so have v scant details at the moment. How about you?

[Knina in reply to Victoria81]

What is v scant?

I am seeing the doctor, but it feels like she is brushing me off because I am not in pain as many others. Sometimes pain is worse than a year ago to the point it is very hard to walk. Other days I am fine and nothing bothers me. I tried several hormonal therapies, nothing worked for me so far because of side effects. I am on Danazol now, but had to stop due to the side effects. Will see the the doctor at the end of September. She told me to treat it as endometriosis because nothing much is known about it and the treatment guidance is as it is endo. I am on endo diet and figured out that diary does not work for me. It is hard diet, but I am getting used to it. Does not miss cheese as much as before. it's a progress Gluten affects me as well. Very happy that I am not alone and see that people do have pain with endosalpingiosis.

[Stlxox]

I know you posted this a long time ago but I was diagnosed in April with endometriosis and endosalpingiosis x

[Knina in reply to Stlxox]

Hi, what is the treatment for you? Did you doctor talked to you about endosalpinogiosis? Thank you for reaching out to me.

[Stlxox in reply to Knina]

That’s okay I’m glad I found someone in a similar situation, I’ve been advised to treat it like endo and to take the pill back to back but that’s not exactly working for me I put a post on my profile about it and I’m just really suffering atm I’ve been to doctors since my lap about 5/6 times and keep being fobbed off