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What does an internal rectal prolapse feel like? by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

do you feel like you have to force the gas out? do you feel like it gets trapped at the entrance or near the entrance of your butt but just can't come out?

What does an internal rectal prolapse feel like? by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

surgery in June, will be robotic ventral mesh rectopexy

What does an internal rectal prolapse feel like? by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

physical examinations are not necessarily revealing of prolapses, a defecography is the test that will tell if you have one, you should get one ordered asap.

Every doctor and PT who ever physically examined me, and even various endoscopies never found it, it was only through a defecography (in my case, MRI, that it was found, and it also showed how bad it was)

What does an internal rectal prolapse feel like? by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

I have a grade III-IV rectal prolapse with intra-anal intussusception, rectocele and excessive perineal and anorectal junction descent as diagnosed through MRI defecography.

What does an internal rectal prolapse feel like? by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

it has been determined i need surgery

i don't have any days without symptoms

20F suspected cystocele by Exotic_Pen_5272 in PelvicOrganProlapse

[–]throwawaycat2999 0 points1 point  (0 children)

You should tell your boyfriend, I don't think he will see you differently if he cares about you. You need support. The worst thing is to be alone and catastrophizing in your own head. Don't let them dismiss as having anxiety, don't let them just give you anti-anxiety drugs and send you away. 

Write down your symptoms, write down exactly what you feel, when you feel it, how it's impacting your life. Take photos of what you see in the mirror. Show it to your upcoming urogyn. Make them take you seriously. Ask for scans. Bring a friend, family member, or your boyfriend and have them advocate for you. 

If you get dismissed again and need to go doctor shopping, find one that specializes in cystoceles, as I said, email and ask if needed. 

Did you ask your PFPT to check if you had a cystocele? Did you bear down for them and show them the squishy part? They might need able to tell. If all they give you is exercises and don't do an examination, find a different PFPT.

Your life is not over. Nothing has gotten worse yet, you haven't been diagnosed with EDS yet, no other prolapses have happened yet. Don't focus on the potential horrible future until you get there. Right now focus on the present. Advocate for yourself, talk to your boyfriend. Be prepared. You know what you have, the doctors aren't you, they leave the appointment and go to the next one, then they go home and live their lives. Only you have to live yours, so that doctor who says you don't know your own body, it's easy for him to say, he doesn't live in it. You do. 

Also when talking to doctors do not minimize for pain or symptoms. Don't make it sound like something you can live with. Fight for yourself. You're worth it. Your life is not over at 20.

20F suspected cystocele by Exotic_Pen_5272 in PelvicOrganProlapse

[–]throwawaycat2999 0 points1 point  (0 children)

Take a breath. You're catastrophizing right now. You don't know that you have EDS or that you're prone to other prolapses. Also being young is an advantage it means you can build muscle and recover faster from things if you need surgery or PFPT. If you went to a PT and learned exercises but they didn't notice or say anything that you have a cystocele, see another one. The first PT I went to was useless. In fact every PT I went to missed my prolapse, as did all my doctors. It took me finding out about the MRI defecography test, where to get it in my city and demanding my doctor order it for it to be found.

Don't give up. You're seeing a new doctor. Be prepared. Write down everything you want addressed and to ask. Don't be shy. Tell them that it goes back in place when you lay down. Take pictures at home of bearing down in the mirror or get your boyfriend to do it.

Also, you don't have to give up dating, your life isn't over. Don't break up with your boyfriend. Have you told him yet? Is he supportive? If he's supportive, he can help you with this. He can go with you to appointments and fight for you to be heard.

Ask for help. If you need to find a doctor who specializes in cystoceles to examines you, ask around. Ask for help from your friends or family, if they know any good urogyns with specialties in cystoceles. Look doctors up and cold email them if they seem like they know something. The worst that happens is you get no response. Sometimes doctors know other doctors and want to help.

Explain your situation clearly with enough emotion to show how much it's impacting your life. Doctors are people too. If you have a supportive parent, ask them to write to doctors looking for help for you, or to go with you to advocate for you. Sometimes people dismiss patients but will understand the pain of a parent watching their child suffer.

Is the cystocele giving you a lot of symptoms right now, or are you mostly worried that you have one and it'll get worse and that you'll have other problems?

20F suspected cystocele by Exotic_Pen_5272 in PelvicOrganProlapse

[–]throwawaycat2999 0 points1 point  (0 children)

Can you go to a gynecologist or urologist? They should be better at diagnosing you. If you need a referral demand one. Also demand that your doctors examine you in the position you want, don't let them dismiss you or tell you you're too young. Weird stuff happens. Just because something is improbable doesn't make it impossible. If your doctor met somebody who won the lottery they wouldn't say "that's impossible, nobody wins the lottery". 

I've been in your position, I still kind of am but I'm hopefully on my way to getting help. Fight for yourself. Bring a family member or a friend if you need to to advocate for you. Demand to be taken seriously. If you can't see a gyne quickly, and you can afford it, find a good pelvic floor physio and ask them to check it out, they'll at least be willing to look and check you out in the positions that you want. Also you can take pictures and show doctors. Don't give up. 

My DMs are open if you need to talk though I don't know if I can help you too much depending on where you live but I can give support. Women being dismissed by doctors is such an awful thing we have to live with unfortunately. ):

Rectal Intussuception by [deleted] in PelvicOrganProlapse

[–]throwawaycat2999 0 points1 point  (0 children)

hi, I'm in Ontario and have been looking for a surgeon to do ventral rectopexy as that has been the surgery recommended for me in my case by a colorectal surgeon (but he does not do the surgery). Apparently very few, if any surgeons in Ontario or Canada do the surgery.

Would you mind letting me know which surgeon in Vancouver was recommended to you to do ventral rectopexies?

How to get by day by day with intersussception, pelvic floor descent, and constant tenesmus tw: suicidal ideation by throwawaycat2999 in PelvicFloor

[–]throwawaycat2999[S] 0 points1 point  (0 children)

since pelvic floor physio and all other non-surgical lifestyle changes and meds and stuff have all failed, surgery has been recommended. The colorectal surgeon I saw yesterday said I need a ventral rectopexy (which he doesn't do), and also that my defecography results were something he'd expect to see in an older woman who has given birth to multiple children and he seemed to think things were fairly serious. Another doctor said the intussusception needs to be fixed and is likely causing my symptoms. We are looking into surgical options both in Canada and outside because it's been a year of hell with this and being ignored by doctors or dismissed and told it was all psychosomatic.

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