Factor V Leiden and MTHFR with Hysterectomy (TLH) (Endometriosis and Pelvic Congestion Syndrome)

I have two blood clotting factors, Factor V Leiden and MTHFR and am scheduled for a TLH in April. I have had 2 DVT's and a massive clot in my uterus that needed a DNC to be removed. A hysterectomy has become my only option. I have Endometriosis and Pelvic Congestion Syndrome. I know there is no cure for endo but hoping for relief. I tend to get clots even while on blood thinners and regular movement. My doctors have come up with a plan together of how to go about the surgery but I am scared about the clotting more than anything else. And on top of that I have to fly (first time flyer as well) which doesn't help. Are there any others out there with the blood clotting issues who have gone through a hysterectomy? Any advice or words of encouragement? Thanks so much!!

Hi Ms. Jess to HysterSisters!

I am so glad you found this site. I wish I could answer your questions, but I have no experience with this. We do have lots of women on this site, so hopefully ones with experience will see this post and respond. In the meantime, here are articles that may help.
Blood Clots, Blood Thinners, and Hysterectomy
Pelvic Congestion Syndrome (PCS)

I am glad your doctors have a plan - that really helps. Are you flying to go to your hysterectomy? If so, how long do you plan on staying at the surgery local? There can be issues with flying after surgery.

Thank you for the article links, I will be sure to check those out! I am flying to and from the surgery, my team of doctors thought the hour and a half flight would be safer and more comfortable for because the drive home is almost 11 hours. I will be having surgery on a Tuesday and flying home on a Friday afternoon. The flight is a non stop flight as well so hopefully that helps!

Hello my friend!! I have MTHFR and have had recurring mini-strokes as a result. I also take a blood thinner. I'm glad to hear that all your doctors are working together and have a plan. Hysterectomy was my only option as well. I had my surgery, a TAH/BSO on December 19th with no complications. I was just released today from my docs care. Make sure all your nurses are aware of your clotting disorder as I'm sure they'll want you up & around soon and often. As far as flying, contact your airline and ask for an aisle seat if you don't have a seat assignment yet. I fly regularly and do this as well as plenty of water and get up to walk the aisle several times every 30 minutes. I typically let my flight attendants know as well. Also, get a wheelchair transfer on your return flight. I just flew last week and this was a godsend. Best of luck to you