Endometriosis?

posted 4 months ago in TTC
Post # 2
Member
2779 posts
Sugar bee
  • Wedding: October 2017

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@bageewee:  I have PCOS, and I don’t display cysts as a symptom. They can perform other tests to determine if you fit the criteria for PCOS. The name for the syndrome is a bit of a misnomer, because in the beginning they found women had cysts with this diagnosis, but have since found that’s not always the case. I don’t know about endometriosis, but I wouldn’t rule out PCOS yet. Some of your symptoms (irregular and painful cycles) sound like mine. I saw a doctor who specializes in endocrinology and diagnostics to finally get answers. PCOS is commonly tied to insulin resistance, and my getting in Metformin really helped regulate my cycles, eased my constipation, took away the pain of my cycles, and my baby girl is 2 weeks old, so it is possible to get PCOS under control and conceive. 

Post # 3
Member
98 posts
Worker bee

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@bageewee:  
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@bageewee:  You sound like me!!! The unbearable pain heavy bleeding otc that never worked I tried so many things! I was diagnosed with endometriosis which at that point I knew! I kept bringing it up to my doctor as I knew this was just not normal! I would typically have to take off from work due to the intense pain and flow! That was with a super plus tampon and super plus pad on! My first doctor was so dismissive and would say some get it worse than others. It wasn’t till I moved and had to find a new doctor that it was finally addressed! I struggled to get pregnant naturally we were having fun and letting things be for about 5 years. I finally spoke to my doctor about it and he ran a bunch of test their were issues on both side but nothing was bad enough to where we could not conceive on our own. We went on to do 6 IUIs nothing! Finally went through ivf currently a mom of 2month old twins. 

Post # 4
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623 posts
Busy bee
  • Wedding: City, State

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@bageewee:  

Ask about the option to take a Receptiva test.

 

I had no noticeable symptoms, except low AMH and I wasn’t getting pregnant.  After doing IVF, but before my first transfer, my fertility clinic urged me to take a Receptiva test, which tests for certain markers that may or may not indicate an increased chance of endometriosis.  My test came back very abnormal, which was a total surprise to me.  

 

At the suggestion of my OB (which most OBs don’t know a lot about endo), I did an HSG (which checked if the tubes were blocked), and another ultrasound (but you can’t really see endo on an US).  I was told I’m fine, there’s nothing wrong – spoiler alert – she was wrong.

 

I finally found an endometriosis specialist, took my Receptiva results, along with all of my symptoms (years of tummy aches, infertility, constipation, frequent UTIs, etc which I didn’t realize could be symptoms), and he was pretty certain I had endo.  The ONLY way to actually diagnose endometriosis is to do laporascopic surgery to check and see, if you have it they can usually treat it in the same surgery.

 

I urge you to do some research as to the benefits of surgery over medications that mainly just masks symptoms.  I also recommend if you choose to go down this route to find someone skilled in minimally invasive robotic surgery and ask questions about the different ways they would remove the endometriosis if they found it.

 

Most of all, listen to your inner voice and if you think something’s wrong, you know yourself best.

Post # 5
Member
233 posts
Helper bee
  • Wedding: April 2002

I found out I had endometriosis when I was 19. I had very paingful periods with heavy bleeding that always lasted a full 7 days. I’ve never heard of anyone having shorter periods with this condition and I know quite a few other people that have it. I suppose that could happen, but I’ve never heard of it. Have you told your doctor you have been trying to have a baby? Most doctors if they know you have been trying for a few years with no success will look deeper into the issue. I suggest asking around for a better doctor. I also know people who had the same problem you are describing and had no medical issue at all and had great success in having children. I wish you the best of luck and hope you can get this figured out.

Post # 7
Member
790 posts
Busy bee
  • Wedding: July 2015

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@bageewee:  I think it would be helpful to see a reproductive endocrinologist at a fertility clinic, not a gyne. Why would they want to prescribe you bc if youre TTC? Unless you are priming for ivf….you should not be taking BC. Please find another doctor. 

I just found out I have endo in July. We’ve been TTC for 1 year. They found large endometiomas (endo cysts) on my ovaries. I was brushed off by doctors in the past when I told them about my painful periods. It’s really frustrating. I’m starting IVF in the next couple months. 

Good luck on your journey!

Post # 8
Member
47 posts
Newbee
  • Wedding: April 2015

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@knotyet:  I have PCOS, and I don’t display cysts as a symptom. They can perform other tests to determine if you fit the criteria for PCOS. The name for the syndrome is a bit of a misnomer, because in the beginning they found women had cysts with this diagnosis, but have since found that’s not always the case. I don’t know about endometriosis, but I wouldn’t rule out PCOS yet. Some of your symptoms (irregular and painful cycles) sound like mine. I saw a doctor who specializes in endocrinology and diagnostics to finally get answers. PCOS is commonly tied to insulin resistance, and my getting in Metformin really helped regulate my cycles, eased my constipation, took away the pain of my cycles, and my baby girl is 2 weeks old, so it is possible to get PCOS under control and

 

@bageewee: This. I also have PCOS, and only had one little cycst  in the last 15 years. Have you spoken to your Ob about using medication? I’m currently 4ish weeks preganant with my first after one round of femara.

 

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