Feeling so isolated after my diagnosis of endosalpingiosis

[HSBhere]

I’m at a loss. I’ve had years and years (20/25+) of symptoms that within the last year came to a head, and I finally had a referral for a laparoscopy.

Although I had no endometriosis there during my lap, I was diagnosed with endosalpingiosis and since then it has been awful.

I’ve had migraines, sickness, nausea, pelvic pain, chronic fatigue and I’ve bled continuously since April. I’ve been to my GP (transferred back to the NHS) and quite frankly, there is no support. Not one GP I’ve seen is taking me seriously and I feel so isolated.

I’m currently on long term sick from work and I’m too frightened to go back with all this going on. It’s taken me 10 years to get where I am in my career and I’m worried I might have to give it up.

Is anyone aware of any endosalpingiosis specialists that I can access? Has anyone had any support with this condition? What can I do next?

[ChildofGod07]

I'm so sorry you are going through this. I may have never met you but I can tell you are a strong and brave women. You remind me of the story of the boy, the fox, the horse, and the badger. When the boat asks the horse what the bravest thing he had ever done he said "ask for help " xx

[PinkPantherStyle]

There is often a practitioner in your surgery who has a passion for womens health. Ask the practice receptionists, or email your GP asking for that person to advise you where to go next with your explanation. Contraception & sexual health services may also have great knowledge of those with interest in the locality and further a field.

[Twin4Life]

I am so sorry you are going through this and that the NHS are not taking you seriously. I had never heard of endosalpingiosis, so I just looked it up. And, I cannot believe no one in the NHS is doing anything to help you. It is a serious condition. If I were you, I would make a complaint to your surgery, and if they still don't do anything, I would take the complaint higher up.

Unfortunately, I can't really give you any advice about what you should do next, because I do not know anything about endosalpingiosis. But, I did find two different support groups for people with this condition on Facebook. The people in those groups may be able to help you more, as endosalpingiosis is apparently quite rare.

Here are the links for the support groups: facebook.com/groups/Endosal...

facebook.com/groups/endosal...

[Chel91]

Hi, did they excise the endosalpingiosis during the surgery? How many samples did they send to pathology? I think this is rarer and less well understood, but excision is likely the best treatment, basically remove it just like you would with endometriosis. It's also possible that endo was missed. If you are seeking a specialist, then a very experienced excision surgeon is probably your best bet. Did you get referred to a specialist endo centre or who did your lap? xx

[MY12345]

So very sorry you are feeling like this but you are strong and have been for years. You will keep going as your resilience is admirable. I have no advice as such as not aware of the condition but there are lots of support groups on social media and online e.g endosalfoundation.org. Good luck ❤️❤️❤️

[brontec]

hi

As other supportive people here have commented and written - keep strong and do not let this stop you in all you want to achieve.

On a practical level, the only advice I have, in terms of yo ur work (not sure what your job is?) - seek some Union advice and get support from them. Unions can help with employers. You must not be in fear about your career and this may be a source of some help through the union. I am a teacher and have been supported through my union in the past, hence my advice here. X

[pickles36]

I have now got a fab female GP as I didn't feel I was getting anywhere and pushed from one GP to another. Make sure you a decent GP and when you make appointments make sure you ask to see that one as they will know your case and know what to do.

[Amanda05 in reply to pickles36]

Hello how are you getting on with everything please? My daughter is newly diagnosed.