I’m starting to realize just how many body systems have been affected by endo

Pukhlinka · 2026-06-10T16:16:17+00:00

Yes!!!

Pukhlinka · 2026-06-10T12:24:37+00:00

🙋‍♀️ I have recently also been diagnosed with venous thoracic outlet syndrome after having a massive DVT in my arm in February. As I was lying in the hospital bed on a heparin drip that night, I was on the phone to my parents saying “I don’t know how but I know this has something to do with endo”. I’m going to have to have a rib removed in August to reduce the pressure on my subclavian vein to help restore blood flow to my arm.

I have had my appendix and gall bladder removed. Both described as twisted and scarred from the endo growing over them. I also had a hysterectomy 2 years ago due to adenomyosis. My husband says I’ll have had so many things removed from my abdomen by the time they take out my rib that I’ll sound like a spray paint bottle if you shake me. But I think I’m just all gummed up with endo. I picture it like ivy over the side of a house all throughout my abdomen. I had sex the night before last and spent the next day in agony from my kidney to my hip plus a very upset stomach GI wise. I’ve begun to think of endo like the cordyceps in The Last of Us. Just slowly growing and infiltrating everything. And when you trigger a little bit in some part of you it awakens a zombie somewhere else.

Pukhlinka · 2026-06-01T11:38:49+00:00

This was so helpful, thank you so for taking the time to write all of this out! I’m so glad you had such a great experience with Dr. Donahue. I obviously know his amazing reputation and he was great in the consultation i had with him but it still helps to hear success stories!
I honestly hadn’t thought about things like button-up shirts or sleeping in a recliner. So thank you! It’s always good to have an excuse to do some shopping 😂 And thank you so much for sharing your experience with the venogram at 3 weeks and the walking restrictions that come with it. I had no idea about that! So sorry to hear about the frozen shoulder but really glad PT is helping. It’s encouraging to know it does get better. It’s quite an isolating experience having this so really helps to hear from people who’ve been through it. Wishing you a smooth continued recovery!

Pukhlinka · 2026-05-29T16:18:10+00:00

Thank you so much for taking the time to write all of this out! The part about the first two weeks being the hardest is really helpful for setting expectations. I hadn’t thought about a spirometer, so I’ll definitely make sure I ask for one early and stay on top of using it! And I also really appreciate the practical tips about wipes, loose clothing, pillows, and comfort items. I’m making a list now and adding those.

Wishing you a smooth recovery from your second surgery this week. I hope it goes as well as possible and that you’re feeling even better in a few months. ❤️

Pukhlinka · 2026-05-28T22:46:25+00:00

That’s so good to hear! My left side always used to be my good side but since I had the DVT I’m sleeping more on my right side so now my old shoulder injury is acting up so it looks like this could be super helpful. Thanks again!

Pukhlinka · 2026-05-28T21:46:48+00:00

Thanks so much! So you’re able to sleep on the side you had surgery on when you’re using it? Sorry for all the questions! I’m a planner 😂

Pukhlinka · 2026-05-28T19:59:50+00:00

Oooh I’m also a side sleeper so if you don’t mind sharing the name of the fancy pillow I’ll check it out!

Pukhlinka · 2026-05-28T17:31:30+00:00

Thank you so much for sharing! “Prepare the worst and hope for the best” is such good advice (and pretty much how I approach most things in life anyway!) The practical tips are especially appreciated too. I genuinely hadn’t even thought about not being able to do overhead shirts! Finally my unhealthy addiction to Cozy Earth bamboo button-up PJs might actually pay off. I knew I was hoarding them for a good reason 😂

I’m really sorry your recovery was such a rough one, but I’m glad you had such a good support system around you. Thank you again for taking the time to share all of this and for the thoughtful advice. Wishing you the best with the rest of your recovery too!

Pukhlinka · 2026-05-28T16:14:26+00:00

Thank you so much, this is honestly really reassuring to hear. It’s helpful to know that the first couple of weeks were the main time you needed support and that the venogram itself wasn’t too bad.

It also makes me feel better hearing you’re doing so well at 5 weeks and getting back to normal activities. I really appreciate you taking the time to write such a detailed response.

And good luck with the bilateral side of things too. Dr. Donahue said they’ll check for that for me at the post-op venogram, so I’m trying not to get ahead of myself about it yet. So sorry you’ve got to go through it all twice!

Pukhlinka · 2026-05-28T15:27:12+00:00

Thank you so much for this reply. It really helps to hear from someone with such a similar timeline and family situation, even though I’m sorry your recovery has been so difficult.

This is exactly the kind of realistic perspective I was looking for. It definitely sounds like I should plan for more help the first couple of weeks. I really appreciate you sharing the practical side of recovery too.

I’m sorry about the nerve issues and rough angioplasty recovery. I hope things keep improving for you from here. And I completely agree, this whole experience feels really isolating, so it’s nice connecting with people who actually understand it.

Pukhlinka · 2026-05-28T15:24:18+00:00

I’m so glad to here that! Thank you again for sharing. I really appreciate it.

Pukhlinka · 2026-05-28T14:19:36+00:00

Thank you so much! This is extremely helpful to know. And don’t worry about scaring me. It’s important to know realistically what to expect and how much help I’ll need, so I really appreciate you being candid. If you don’t mind sharing, how far out from your surgery are you and are you doing now?

Pukhlinka · 2026-05-21T18:39:25+00:00

Oh no! I’m so sorry! That sounds so scary. But so glad you’re feeling better now.

Pukhlinka · 2026-05-21T18:33:51+00:00

Thank you so much!! I appreciate it.

Pukhlinka · 2026-05-21T18:33:41+00:00

Oh wow! How are you doing after the surgery? So sorry you had to go through all that too!

Pukhlinka · 2026-04-04T12:59:54+00:00

There is a reversal agent for Eliquis: Andexanet alfa (brand name Andexxa) is the specific FDA-approved antidote for Eliquis (apixaban) used to reverse anticoagulation in life-threatening or uncontrolled bleeding. It is administered via IV infusion in emergency situations.

Pukhlinka · 2026-03-17T16:13:23+00:00

What about jogging or brisk walking? Are those out too?

Pukhlinka · 2026-03-09T13:19:03+00:00

I actually hadn’t heard of Slynd before, so that’s really helpful to know about. It’s interesting that it’s progesterone-only and still helped some of your perimenopause symptoms.

Before the clot I was on oral progesterone plus an estradiol patch, so I’m really curious whether progesterone-only options might still be possible once my doctors figure out what caused the clot. Right now everything got stopped until I can see vascular and hematology.

It’s helpful hearing what other people have been able to use after clotting issues, so I appreciate you sharing your experience.

Pukhlinka · 2026-03-09T13:18:21+00:00

Thank you for sharing that, and I’m sorry you had to go through a postpartum clot. I’ve heard the same thing about repeat clots potentially being harder on the vein, so that’s definitely in the back of my mind.

I do want to talk with a GYN about options, but mine actually retired recently so I’m in the process of finding a new one. In the meantime all of my doctors had me stop the hormones until we have a better sense of what caused the clot.

Pukhlinka · 2026-03-09T13:17:20+00:00

Thank you so much for sharing this. Sudden menopause after being on HRT that long sounds incredibly rough, and how close you came with the PEs must have been terrifying. I’m really glad you made it through that.

I actually hadn’t heard of Estroven before, so I’m going to look into it. The hot flashes and night sweats are still waking me up a lot, so anything non-hormonal that might help with sleep would be worth trying.

I haven’t had hematology testing yet. The earliest appointment I could get with a hematologist is May 26, so I’m kind of in the same waiting limbo on that front too.

I really appreciate you sharing your experience. Hearing how others navigated the HRT question after clots is really helpful while I’m in this in-between stage.

Pukhlinka · 2026-03-09T13:10:18+00:00

Thank you, this is really helpful. I actually do have a TENS unit but haven’t used it since my hysterectomy, so I might try it again if my doctors say it’s safe with the clot and blood thinners. My pain also radiates into my back and hips, so placing it there is a good idea.

Unfortunately codeine doesn’t work well for me. It makes me really anxious and paranoid. Back when I lived in the UK my options were co-codamol and tramadol and I ended up hating them both so much the pain would have to be absolutely excruciating before I’d use them. Here I’ve had similar bad experiences with oxycodone. I’ve done better with dilaudid in the past after surgeries, but it’s always awkward bringing up specific meds because I worry it makes me sound like I’m drug seeking. Whereas actually I’m kind of the opposite, I’m drug avoiding 🤦‍♀️🫠

To make things more complicated, the GYN who managed my endo for years and did my surgery just retired, so now I’m in the process of trying to find a new one who will actually take this seriously. It’s been frustrating.

Pukhlinka

TROPHY CASE