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A MyEndometriosisTeam Member asked a question 💭

I feel abit of a hypochondriac because I'm in the middle of being diagnosed and just want people around me to realise what I'm going through isn't in my head. I've hid it for abit because I was quite and embarrassed by some of the symptoms. My bladder is shit the pain near my right hip is just nearly always there and the pain from sex can make me want to disconnect but not always and periods can last to a max of 18 days. I went to a therapist before I even knew what endometriosis was because I… read more

posted February 1, 2020
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A MyEndometriosisTeam Member

I'm sorry, I think you're using some names for things that are brands we do not have here. Not sure what 'ovreena' is; according to a quick Google search it's a birth control pill. But you talk about a "bar since it's gone missing" . . . Are you talking about an intrauterine device that got misplaced?

I can't speak for what the doctors will do. Many gynos here in the US do not understand endo well at all. That's why I highly recommend finding an excision surgeon. They understand the disease best and they know it doesn't always show up. Nancy's Nook on Facebook keeps a resource list and a list of surgeons. They will know where to direct you.

posted March 8, 2020 (edited)
A MyEndometriosisTeam Member

Thank you so much for that, I got worried when they told me it would affect my chances I really want kids naturally if possible, they put me on the ovreena to suppress my time of the month but it's with the bar since it's gone missing and I'm waiting on an x-ray to find it, so I'm not sure how affective it is. They said it will get better with time and the pain will lessen and if it happens just take some panadol. I'm just wondering would there be a surgeon willing to actually take a look without it showing on the ultrasound? The gynae said there was no reason to? That's my last question thanks again and I'll definitely take a look at the articles you sent I really appreciate that you took the time to read and write a response..

posted March 8, 2020
A MyEndometriosisTeam Member

So, it's often the case that endo does not show up on imaging. I only had it show up on an ultrasound once, and that was done by a Physician Assistant who worked for Dr. Nezhat, an excision surgeon. From everything I've read, excision surgery actually increases your odds of having children later. Because it removes the disease and adhesions, so the organs can function normally.

I've got some more links here that might help. Let me know if I can help further.

Overview of Endo: https://pacificendometriosis.com/what-is-endo/

Excision Surgery Overview: https://pacificendometriosis.com/excision-of-en...

Endo Treatment Options: https://www.vitalhealth.com/endometriosis-speci...

Interviewing a Surgeon: https://www.endofound.org/preparing-to-see-a-do...

Excision vs. Ablation Surgery. WARNING graphic surgical photos. https://www.endometriosisaustralia.org/post/201...

posted March 8, 2020
A MyEndometriosisTeam Member

Thank you very much for writing back I really appreciate it, if you don't mind could I possibly write a question for you? Completely understandable if you don't know, I went to my gynae appointment after the ultrasound last month. They couldn't see any cysts or endo so said going in to check would do more damage if I wanted kids later on?There was fluid in my uterus which she said was possibly a burst cyst and after saying my right side really hurts sometimes she told me that my right ovary is bigger but not a crazy amount. I'm just wondering if going in for an excision would cause me to not have children later on.

posted March 8, 2020
A MyEndometriosisTeam Member

Rambling is ok, especially when trying to formulate what you need to know. Which, with Endo, is a lot. Given that so many family members have it and your symptoms, it is suspicious. I would suggest finding an excision surgeon and getting their opinion. Nancy’s Nook on Facebook has a ton of resources and a list of surgeons. Also, I have a list here of good Endo information that has helped me. Other users have found it helpful too. I would start with Dr. Cook’s Insta and the Endometriosis Foundation of America site to get an overview. Let me know if I can help at all.

https://www.myendometriosisteam.com/users/5d1ab...

posted February 1, 2020

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