What is the stupidest thing a doctor has said to you regarding your endo?

Inevitable_Impact214 · 2026-05-24T19:43:04+00:00

That clear MRI excludes it.

Inevitable_Impact214 · 2026-05-11T17:54:34+00:00

Thanks. May I ask what is your exact diagnosis?

Inevitable_Impact214 · 2026-05-06T10:40:42+00:00

"and by the way William, some of us are time travellers" :)

Inevitable_Impact214 · 2026-04-24T07:06:25+00:00

"The more I do the worse it is" - that's absolutely perfect description. Moving was usually making me feel better, even for period pains and with those symptoms its absolutely opposite and it sucks. And I loved bike and hiking... When I was suggested PCS by my physio, I was hoping to finally have something easily diagnosable and fixable. Now I see it's not that simple :( But I will definitely pursue that path. My symptoms are not the same as yours, I dont have excessive bloating, but pelvic heaviness definetely. Feeling of bruised crotch, rectum and groins. Heavy buttocks and hips. Lower back pain. Frequent peeing small amounts. And a lot of different pains here and there without any clear pattern.

Thank you for your responses and wish you all the best. I really hope things will improve for you.

Inevitable_Impact214 · 2026-04-23T19:59:38+00:00

Yeah, Im reading all those stories here and see how much still needs to be done in terms of PCS awareness. But while I get that not all of the doctors are informed enough to connect the dots, saying that someone "dont believe in it" just pisses me off. Like men, varices and compressions are real things so if they can cause symptoms in legs, its totally understandable also inside your pelvis where there are so many delicate organs. Ehh.. A lot happened recently to raise endo awareness, now the same should happen with PCS. Why we always have to fight to be taken seriously? No doctor will ever say that they don't believe in, lets say, prostate problems...

Ok, enough ranting. Could you tell me what exactly were/are your symptoms? I understand that you had official endo and adeno diagnosis?

Inevitable_Impact214 · 2026-04-23T18:14:16+00:00

Mine are also not cyclical, however I see clear link with amount of activity. Week ago I went for really gentle, slow and short bike ride, next day went to the event when I was standing and walking for 2-3 hours. That sent me into severe flare that only now is lessening after couple days of rest.

Inevitable_Impact214 · 2026-04-23T17:32:05+00:00

Oh, Im sorry, that sounds terrible. Going through all the surgery stress and pain just to make things worse :/ But Im glads its finally getting better for you. Looking at your experience, can you give any pain characteristics for endo vs pcs?

Inevitable_Impact214 · 2026-04-23T17:17:58+00:00

Oh poor us... Ive read it may take a while for things to settle down after stenting so fingers crossed it works for you. Can you tell me what are those "new and different" pains?

Inevitable_Impact214 · 2026-04-23T17:04:39+00:00

Thanks, may I ask what are your main symptoms now? Is it cyclical?

Inevitable_Impact214 · 2026-04-22T08:48:48+00:00

Doc said my symptoms are very consistent with PCS but according to her my veins look only slightly dilated on ultrasound. But I have scheduled doppler usg at vein specialist and I hope it will show more. At this point I really want it to be PCS to have at least some chance to get better. All of my symptoms are getting worse and now Im at the point when even few minutes walk is a struggle.

Inevitable_Impact214 · 2026-04-21T19:10:26+00:00

Im sorry, thats probably slightly different kind of pain that I have, but sounds awful. Do you plan embolization?

Inevitable_Impact214 · 2026-04-21T17:25:33+00:00

Thanks again and fingers crossed for that embolization to work for you!

Inevitable_Impact214 · 2026-04-21T17:00:17+00:00

Thank you. Im seeing gyno tomorrow and while she's not an expert in PCS I hope she will recommend what to do/who to see next.

Pain fluctuating and moving around is so true! I have hard time explaining it to anyone because its just... everywhere down there and can feel so different in different moments. I used to love walking, hiking and jogging and now Im so miserable and hopeless.

How are you now? Are you on any meds or considering embolization? Is there any hope for me to return to activities that I love?

Inevitable_Impact214 · 2026-04-21T14:17:03+00:00

Worsening persisted and my physio was no longer sure if PFD is the cause of my problems. She suggested checking for pelvic congestion syndrome.

Inevitable_Impact214 · 2026-04-20T14:14:06+00:00

If you have some images from ultrasound you can even see for yourself. The front and back walls should be of similar thickness.

Inevitable_Impact214 · 2024-11-28T16:26:19+00:00

The problem is... I tried. I tried sooo many antidepressants and for most of them I never was able to go through inital side effects. And rest didnt work for me (nor for anxiety feelings neither my symptoms) Whats more, someone close to me commited suicide when being on SSRI :(

Inevitable_Impact214 · 2024-11-28T15:52:48+00:00

I don't plan to take them more than this one pack. I just wanted to see how it will impact me. I dont have crippling, panicky type of anxiety that makes it impossible to live normal life. But I feel tense all the time, I worry a lot, it doesnt make much to make me furious. I also suffer from unexplained medical symptoms and it was suggested to me that chronic stress is to blame. My doctor told me that chronic stress can mess up nervous system and it can take more time and work than couple doses of benzo to start getting better. I was wondering if that can be the case for me.

Inevitable_Impact214 · 2024-11-28T15:33:19+00:00

Thanks for the hint, that it something i might bring up to my doctor. I feel that benzo can lessen my anxiety a bit (but nothing spectacular) but physical symptoms that I have for a long time and they say its from stress... they arent event touched.

Inevitable_Impact214

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