Avatar universal

A Triple Whammy

I have endometriosis, PCOS, and factor v leiden and I am just about at my wits end. I just recently had a laparascopy to diagnose the endo and to drill my ovaries to remove some of the cysts. Apparently the endo couldn't be removed and I have an Allen-Masters defect. I'm in pain almost every day and there are not a lot of options for me because of factor v, I'm wondering does anyone else suffer from all of these together? What have you tried? What's worked if anything? I tried norothindrone at a high dose and it caused a fibroadenoma to grow in my breast (which I had removed when I had my lap), and currently I'm at a lower dose but it's not helping with the pain. I just don't know how much longer I can do this. It will be a full year at the end of this month with no relief and it's only getting worse. I want to wait on lupron since you can only take two doses in your life time and some day I want to try for kids so I'm gonna need it.
12 Responses
136956 tn?1425606272
If they could not remove the Endo it means they were not an Endo specialist. Even with some of the issues you have it can be done. Where do you live and I can guide you to a great Endo excision surgeon.
Avatar universal
I live in Nebraska. And apparently it was too close to nerves so if they removed it it would have caused more damage? That's what I was told anyway.
1926359 tn?1331588139
hey there-
I am so sorry you are suffering with this and can totally relate.  I have stage 4 endo and before my last surgery in 2010 it was literally everywhere.  My surgeon who is an endo specialist said it was one of the worst cases she had ever seen.  The good news is that after the last surgery my pain was SIGNIFICANTLY reduced and my heavy bleeding stopped for almost 4 years until 6 months ago I started having major issues again.  Endo causes permanent nerve damage no matter what.  Even if you have an excellent surgeon, you will probably still experience some pain, but nothing compared to what it was before.  Ticked will be able to guide you towards a good surgeon.  It really is all about the surgeon as VERY FEW gynos really know what they are doing in this case.
I am on norethidrone as well and it is doing nothing for my pain, even though my bleeding has mainly stopped.  I am having another surgery this summer at which point I hope to conceive as soon as possible afterwards.
Keep posting, do tons of research.  You REALLY have to push and be a good advocate for yourself as this is an extremely misunderstood disease.  It is debilitating and I totally feel for you.  Just know that there is hope.
Sending support...
136956 tn?1425606272
I am not sure if you can travel to this surgeon but he is one of the best worldwide

Dr. Charles Koh

Reproductive Speciality Center,
2015 E. Newport Avenue,
Suite 707,
Columbia Street,
Mary's Hospital Medical Arts Building,
Milwaukee, Wisconsin.
T: (414) 289-9668

*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!

If not there is one in Nebraska but no where near the skills of Dr. Koh

Dr. Thomas Hilgers

Pope Paul VI Institute for the Study of Human Reproduction,
6901 Mercy Road,
Omaha, NE 68106
T: (402) 390-6600
W: www.drhilgers.com/

Specialisation: OBGYN
Bowl/urinary tract surgery: Works with assisting surgeons
Avatar universal
Yeah I'm definitely finding that out. It really makes you feel like doctors just don't care. It's very frustrating. When I followed up with the surgeon who did my lap she basically was like 'well your only option is lupron.' and when I said I wanted to wait on that until I was ready to try for kids, she basically just said well until then you'll just kind of have to deal with it. Which is all fine and well for them to say because they aren't in pain constantly. Thank you for the help and I hope your surgery goes well and things work out!
Avatar universal
Yeah that is a ways away, but that is definitely a good next step. At this point I'm really ready to do whatever I have to just to have a some what normal life again haha. Thank you for your help!
136956 tn?1425606272
Np I hope you can see dr koh he is one of the best. If you want to save your fertility the best bet is him as if you continue to have surgeries with reg gyno it could make it worse. A lot of gyno just are not educated and some don't care but really though  most don't know what to do they push Lupron and have no idea how to help. Some countries like canada don't have the tools let alone the expertise. In all of canada there are 2 options one in Ontario and one in bc. I am glad I live 45 mins from the one in Ontario I am lucky to have had him do two of my surgeries as I would have been given horrible treatment .

I am here if you need anything else :)
Avatar universal
Yeah that's really the sense that I'm getting, is that they just don't know what to do. The doctor I did my surgery with was the best out of all the ones I've seen so far but even she didn't have much for options for me. It's very frustrating that even though endo is so common, there still is not much known about it. Glad you have a good doctor close! I imagine that's gotta be wonderful. Thank you for your help!
136956 tn?1425606272
It is but even so it took me 4 yrs for him to operate on me again. He was refusing to and telling me that it was in my head than told me I was too high risk and that I had neuropathic pain syndrome. It was a battle but I finally had surgery with him 11 days ago so being persistent helps. I wrote him a letter Dec 24th 2013 and I got a call back from his office Jan 6 2014 booked an appt for Feb 20 and surgery in May. I can send you the link to my blog that shows you the letter I wrote to him but I can't post it here because of the rules.

Also I tried to get out of country surgery and got denied twice so it was a bad 4 yrs and I was in so much pain. I wasn't giving up I was going to see the best of the best no matter what.
Avatar universal
Oh man. I can't even imagine. If I had to go through this for 4 years I think I'd just go insane. Even just one year is enough for me. Wow, I don't think I'd go back to see that doctor again if he told me it was all in my head. I can't imagine how frustrating that must have been! I'm glad you were persistent though. Doctors sure don't advocate for you, you really do have to do it all yourself.
136956 tn?1425606272
The only reason I went back is because I know he is the best in Canada and I didn't want anyone touching me that wasn't as good as him. Once you have the best you don't want to go back.
Avatar universal
Yeah makes sense. Guess I can't blame ya there. Gotta work with that you have.
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