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Endometriosis Community
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Avatar universal

I am fairly certain I have endometriosis and am starting to TTC

Hello everyone!

My husband and I are looking to start TTC, however, I'm very concerned as I believe I have endometriosis. I was never "diagnosed" with it but my doctors put me on birth control to tame the pain. I have had it since I was very young — here's a little history…

When I was 16 I had extremely heavy bleeding (may be TMI, but bleeding through multiple pads within minutes, my pants, etc..) — I would also have my period for months at a time. I was too embarrassed at such a young age to say anything to my parents. I then had appendicitis and that's when I started getting these horrible cramps. The cramps were so intense that I would puke, faint and curl up in a little ball — I couldn't walk. I ended up in the ER 2-3 times before they put me on birth control which helped regulate this pain. I went several years without the horrible pain being on birth control and accidentally missed a pill or two back in 2011 and ran into the same issue. I woke up with horrible pain, fainted twice and ended up back in the ER. Again, they never had a solution. They even asked me in the ER if someone had "witnessed me fainting" or had "proof". My boyfriend at the time was there. They put me on morphine and kept me until the pain subsided and then sent me on my way. I haven’t had a lapse since, however, I am very nervous about going off the pill to try and get pregnant, yet I am obviously willing to do it to try and start a family.

I visited my doctor at the beginning of the month to see what she recommended. She's a family practice doctor and has been great. I told her all this and her response was to "just take some Aleve”.  She was so nonchalant about the situation. It was kind of frustrating as I felt like she didn't understand the severity.

Any recommendations on what to do for the pain if it comes back when/if I get my period?

Also, any recommendations on if I see a specialty doctor or wait?
5 Responses
136956 tn?1425609872
From what you have written and from what I know by research as well as my own journey it sounds like you do have it.

1) The pill helped with pain, that is an indicator
2) Heavy Bleeding
3) Fainting and vomiting from pain

What can help for now is aleve, a heating pad and rest if your doctor will not give you anything stronger. I would even suggest changing doctors because she doesn't seem to know about Endometriosis and the crippling pain it causes.

If you let me know where you are I can help you find a great Endo surgeon which also deals with fertility and Endo.

Let me know

PS.. Your pain is real and it isn't in your head.
Avatar universal
Thank you for the reply! I am in the Milwaukee, Wisconsin area. Would you recommend I try and find a nurse practitioner or gynecologist?

Thanks :)
136956 tn?1425609872
I would recommend a general practitioner (I am from Canada and that is what we call our family doctor) that understands the impact of endometriosis so that she can work with you not against you.

I might have some other endosisters that live around there so let me get back to you on the family doctor thing. :)

You are in luck as well because you are in the same area as one of the TOP Endo specialist in the states. So yay!!

Dr. Charles Koh
beschrijving
Reproductive Speciality Center (http://www.reproductivecenter.com/contact.html),
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: (414) 289-9668
E: ***@****
*Dr. Koh asks that prospective patients get in touch with him directly by email. He also operates in Singapore and is planning to start a clinic in Hong Kong.

*Dr. Koh is recommended by Dr. Redwine as the most skilled endometriosis surgeon in the USA.

Dr. Koh:
Specialisation: GYN only
Bowl/urinary tract surgery: Does all urinary tract and bowel work. Ubersurgeon!
1 Comments
Thank you so much for the help :) it doesn't appear they allow sharing of emails through here as it was starred out. Would you recommend calling the number you provided to get the email address? Thank you!
136956 tn?1425609872
I would call yes. You can actually call to see if they approve your insurance so that would be a good thing to know .
Avatar universal
I would recommend seeking out an endometriosis specialist, or fertility/endocrinology specialists. They will have more experience dealing with endo, especially since you're trying to conceive. Anyone who says you just need to take "aleve" for pain that sends you to ER, is being incredibly dismissive, rude and incompetent. Also, have you ever been tested for fibroids? They tend to be the cause of this heavy bleeding you are describing. Endo can cause some heavier periods, but personally, I have stage 4 endo, and my periods have always been on the clock, 5-7 days, only heavy for first 1-2 days only. So I would recommend getting examined by a good professional as soon as you can to figure out what might be going on. Good luck love
1 Comments
Thank you for the feedback! I will also ask about this :)
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