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Ehlers Danlos Syndrome Ehlers Danlos Syndrome

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  #1  
Unread 08-24-2020, 08:55 AM
Ehlers Danlos Syndrome

Hi all,

Question on if anyone here is diagnosed w/ EDS and what their experience has been like in relation to their reproductive issues.

Some background on what I've been going through..
Have had chronic AUB for 4 years with no idea as to the cause. Just had my first laparoscopy to remove a large cyst on an ovary, and stage I endometriosis was found and removed. Per my OBGYN, neither are the cause of my chronic AUB every day for almost 4 years. Her suggestion was possible EDS, and I've done a ton of research on it, and it seems to line up very well with my symptoms. Only issue is that my health care practice cant help EDS patients, our large university here in MN couldnt either, and I was told only Mayo Clinic can. I'd need a referral to Genetics to see someone... but hoping I can maybe go to a Rheumatologist at my general health care practice? I suffer from chronic pain in my upper body and have been trying to find a solution for months now to now help. Started physical therapy 2 weeks ago in the hopes it'll help... My doctor suggested looking into EDS, as she stated only 2% of women reject iUDs, and that can be more typical for EDS patients. I had 3 iUDs in 2-3 years and that did not go well. Been trying to find the cause for a long time but know there's no treatment for EDS and I think I'd have type 1, 2, or 3. Hypermobility in many joints is something I don't really have, but the rest of the symptoms line up to a lot of my issues. Going to be asking for hysterectomy in 2 weeks as we've exhausted all abilities to find the cause of my AUB.

Would love to hear EDS stories if anyone has an experience w/ or w/o diagnosis, and any issues w/ reproductive health. Not a lot is known about EDS unfortunately.
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  #2  
Unread 08-24-2020, 11:14 AM
Re: Ehlers Danlos Syndrome

It has been mentioned a few times, if you do a search you’ll find a few old post related
  #3  
Unread 08-25-2020, 09:55 PM
Re: Ehlers Danlos Syndrome

Checking further re: EDS sounds like a good idea. Also, I had just sent a reply to a mom about the possible connection between AUB and hormone levels and then saw your post. Seeing an endocrinologist may be something to consider before making a final decision re: surgery since pelvic floor issues and prolapse (as was true in my case.) are possible post-op things to take into account. Dr. Marina Johnson has posted some online videos, and in one of them she talks more about addressing underlying hormonal causes for UB. Also, although you may not be experiencing endometriosis, the link that functional medicine doctors are finding between endo and gluten plus gut inflammation might be something that could help with other uterine issues such as bleeding. Not sure, but it might be worth doing some online research and/or seeing a Functional Medicine doctor to determine whether EDS or perhaps another underlying factor(s) could be at the root of symptoms you've been experiencing. Praying that you find answers and healing soon
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  #4  
Unread 08-26-2020, 06:58 AM
Re: Ehlers Danlos Syndrome

Did you have ablation or excision for your endometriosis removal? Also Adenomyosis could be a cause for AUB.
  #5  
Unread 08-26-2020, 08:57 AM
Re: Ehlers Danlos Syndrome

  Quote:
Originally Posted by Lavender&thyme View Post
Checking further re: EDS sounds like a good idea. Also, I had just sent a reply to a mom about the possible connection between AUB and hormone levels and then saw your post. Seeing an endocrinologist may be something to consider before making a final decision re: surgery since pelvic floor issues and prolapse (as was true in my case.) are possible post-op things to take into account. Dr. Marina Johnson has posted some online videos, and in one of them she talks more about addressing underlying hormonal causes for UB. Also, although you may not be experiencing endometriosis, the link that functional medicine doctors are finding between endo and gluten plus gut inflammation might be something that could help with other uterine issues such as bleeding. Not sure, but it might be worth doing some online research and/or seeing a Functional Medicine doctor to determine whether EDS or perhaps another underlying factor(s) could be at the root of symptoms you've been experiencing. Praying that you find answers and healing soon
Thanks for your note! Had never thought of looking at an Endocrinologist. I've had a lot of hormone blood panels done but every test I've ever had has some back normal, so it's not inherently a hormone thing. Overall it's just been weird and we don't know what's causing the bleeding. Not sure what any other underlying factors could be, but all my OBGYNS have exhausted all methods to finding it. Whether or not EDS is the cause or if I even have it, it's a problem I'm at the end of my rope on.

Do you have EDS and suffered from a prolapse after your hysterectomy?
  #6  
Unread 08-26-2020, 08:59 AM
Re: Ehlers Danlos Syndrome

  Quote:
Originally Posted by krubesch View Post
Did you have ablation or excision for your endometriosis removal? Also Adenomyosis could be a cause for AUB.
I did not, I had my endo removed via Laparoscopy. My OBGYN did not say anything about me having Adeno after that surgery and looking around in there, and I've also had a Hysteroscopy to look at the inside of my uterus and it was fine too.
  #7  
Unread 08-26-2020, 09:11 AM
Re: Ehlers Danlos Syndrome

You might want to find out what they did during the laparascopy. If they did ablation that could be contributing. Most Gyn's do ablation and endometriosis specialists do excision, which removes the endometriosis instead of just burning off the top layer. I had to go to 7 doctors before I found one that could really address my pain according to my research regarding endometriosis. Most doctors do not learn proper courses of treatment in medical school and there is a lot of misinformation with in the medical community.
  #8  
Unread 08-27-2020, 11:13 AM
Re: Ehlers Danlos Syndrome

  Quote:
Originally Posted by krubesch View Post
You might want to find out what they did during the laparascopy. If they did ablation that could be contributing. Most Gyn's do ablation and endometriosis specialists do excision, which removes the endometriosis instead of just burning off the top layer. I had to go to 7 doctors before I found one that could really address my pain according to my research regarding endometriosis. Most doctors do not learn proper courses of treatment in medical school and there is a lot of misinformation with in the medical community.
Thank you, I will check with her at my next appt! Appreciate it.
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