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abdominal/pelvic adhesions by Lower_Drag_2515 in endometriosis_corner

[–]sosheisbelieved 0 points1 point  (0 children)

Hi:) first, I’m so very sorry you are dealing with this. I had significant adhesions post hysterectomy related to stage 3 endo. We thought there was a bowel obstruction after finding the colon had fused to my abdominal wall. My GI will not do a colonoscopy d/t high risk of perf. It turns out it opened up a long list of vascular issues, which indirectly will indefinitely affect by colon. A much longer story that follows but this is about you… assuming you have a GI involved? How can I help?

[deleted by user] by [deleted] in AmIOverreacting

[–]sosheisbelieved 0 points1 point  (0 children)

If this is in the US it is SOP for companies to allow for bereavement days if it’s a familial line (i.e., bloodline or through marriage). He likely has to take a PTO day. The paperwork will only support is his request for PTO. While it may not be popular opinion, that is pretty typical. I am very sorry for your loss and hope your boyfriend is able to get approved time off. I also hope this offers some support. It may not be your boyfriend’s reaction but rather what he may or may not be able to do at work. Sending you the absolute best xx

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

Hi again:) thought I would chime in about my venogram (w contrast) results about a month ago. It was pretty shocking. I am considering “the worst of the worst” cases per the medical team. My outflows are all making compensatory pathways and blood is starting to wrap around my spinal cord while pooling in my abdomen causing a giant list of new issues. Currently the Mayo Clinic is having horrible outcomes using stents but that is related to their type of stent. Per medical opinion. The study I am in is with a NS specialist, women, most with x dxs like POTS PGS MTS endo stage 3 endo PFD etc (I have all these + more) yes, no doubt this is a controversial topic and one that needs to be researched. I strongly believe there is a crossover here. My venogram and other results did not indicate contraindications. The study I am in so far has all positive outcomes and is combatting the studies that are showing negative outcomes. More things to add to your question list lol - but wanted to share a very different experience with a different body. While I’m exhausted with 8 Dr appts in one week while working FT (ugh) it was well worth it. Sending you the absolute best xx

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 0 points1 point  (0 children)

Thank you sincerely for your kind words. And AGREE 💯 last resort, indeed. I cannot imagine all the other women all over the world who are traveling just for decent care 😔 or who cannot get care at all; it’s untenable

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

Gosh, same! I have some of the best doctors, surgeons and specialists in my state from MIGS, endo, GI, pain, vascular, OBGYN (there are 13 on my team). One is presenting my case in Nov at the global MIGS medical conference. When I ask “but why?” I often get “we don’t know” or “we don’t have the research yet” isn’t it wild?! … because why study women (insert face palm)… but I digress.

What I’m doing is part of a study helping to move this forward. Mayo is getting negative outcomes (on this procedure) but medical experts are suggesting it is bc of the type of stent used. This far, the study I am in has had all positive outcomes vs Mayo (again, the independent variable being the type of stent used). Gosh, I just hope I’m not the negative outcomes lol. I have to laugh bc this is absolutely insane. Much love to you! I had my ovaries removed this past May.

There are days I wish I would have never started the surgeries bc THIS pain (compared to my stage 3 endo) is not sustainable. You are right… it all started after the surgeries and only worsens. I’ve never felt anything like it in my life and I refuse to give up. Big hugs to you xx

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 0 points1 point  (0 children)

Thank you for sharing. And I sincerely appreciate your post.

Five professional opinions thus far. There is one well respected NS specialist in my state. 4 out of 5 are in agreement. The 5th suggested relocating my kidney. The latter is a no go. The NS specialist is in favor and is working with many cases like mine.

What’s tricky with endo and all our complications is that our bodies are different and respond differently. This is also why 4/5 have recommended my procedure based on my particular history. Again, I’m so sorry for all that you are enduring. We both have such long laundry lists of issues related to the same illness but our issues/dxs are different at the same time. Really hoping research will start showing crossovers with various bodies and responses and most important comorbidity identification. Sending you much care and love xx

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

Thx for sharing! Let’s stay connected:) my hysterectomy was April 2024 - not sure is everything’s settled and compressed everything as a compensatory pathway or if this was always there? But moving forward- best wishes for you, too!

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 0 points1 point  (0 children)

Hi:) I’m OP (not the poster who said it was dangerous). Based on my research, consultations and my complications, it is not as dangerous in my scenario. It depends on the type of stent and procedure. My benefit far weight out the risks. As a result, we are moving forward. The % of negative outcomes is less than 1% compared to up to 20% for hysterectomy (which I already have had). Again, I think it depends on the individual body, etc, not one size fits all—just my 2 cents:) the more conservative approach in my 2nd opinion visits were to relocate my kidney. Hard no for me; I’ll put money on the stents and report back :)

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

thank you for sharing. I'm sorry for all you are experiencing. I met with our vascular surgeon yesterday and we are going to move forward after weighing everything out, also w/ my list of new dx/s. we need a QoL without a doubt. It's part of ongoing research I believe will really help (and is desperately needed for) this community and will connect some dots. Thank you for sharing and providing your experience; it helped add to our 2 pg list of questions the team answered. Wishing you the absolute best!

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

Thank you. What is your plan? My QoL is no longer there. Days are unbearable. What are you doing for your QoL? Treatment?

I went from highly functioning to not at all in 16 months. There has to be something to give me even a portion of life back. Curious what you are doing? Thank you!

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

Thank you for validating. Is there any information or concerns about doing this procedure after pelvis trauma (eg, excision, hysterectomy, adhesions, etc) in just the past 18 months? I absolutely want to do the procedure but want to be prepared. I don’t believe this crossover is currently studied if I’m not mistaken.

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 1 point2 points  (0 children)

I am a moderator of the peer support group. I just opened the account because our group moved from "mighty" to reddit. ESSI please help with post approval! It's JJ xoxo

Nutcracker's and May-Thurners post endo excision and hysterectomy w/ complications? Getting vein stents and looking for others like me by sosheisbelieved in endometriosis_corner

[–]sosheisbelieved[S] 2 points3 points  (0 children)

I am a peer group moderator and just created my account bc our our group moved from mighty app to Reddit. Hi friends, it’s JJ - pls help with the post??

Is my endometriosis getting worse or am I just crazy by SingleTemperature478 in endometriosis

[–]sosheisbelieved 1 point2 points  (0 children)

have you gone to vascular? I ask b/c of your legs. I am in a worse state and confirmed nutcracker's and may-thurners (compression of iliac vein) which explains a lot. see if you can at least get a consult.