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Can anyone tell me what that is? I had a hysterectomy and my dr. said that he had to rebuild my pelvic floor. He didn't say anything else so I didn't think anything about it, until I started reading some of the posts. I am wondering if it is causing some of my pain.
Melissa..
I know that hot baths seem to really help me..
But what has helped me the most is having my husband rubb my inner thighs below my butt..Sorry to be blunt, but it has really helped.. We also have been researching PFD therapy and have gotten some ideas from that..
You can ask your Uro to recommend a good physical therapist.
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
No problem Weezer...I wish I would have known more about PFD when I was dg with IC.. But my uro said it did not co exsist with IC..Boy was he wrong, I thought all the retention was coming from IC but from what I have learned PFD is what causes people to have retention..Esp if you have had any kind of surgery that has caused trauma to your pelvic.. Like a cysto/hrdro or DNC or hysterectomy even after child birth your pelvic has trauma...
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
I can be so stupid sometimes..
I was editting the post about PFD...and I deleted it.. I am reposting it..
Geesh im glad I had it saved on my word documents..lol
Sorry..
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
What is pelvic floor dysfunction (PFD)? This is non-neurogenic, uncoordinated behavior of the pelvic floor musculature. This is not like Parkinson’s or multiple sclerosis. This is a person who has no obvious neurological disease and the muscle function is uncoordinated. normally the bladder sits in a funnel of muscle. When one voids, the muscle of the bladder contracts, thereby forcing out urine. At the same time, the muscles of the pelvic floor, the levator muscles, and the muscles of the GU diaphragm have to relax. That is the normal process of voiding; it is a complex neurological mechanism. When this happens, there is a good stream of urine. In a patient with PFD, the bladder contracts and the muscles open up, but they are in spasm. They are not working properly. They open and urine does come out, but this can lead to disruptive symptoms.
The symptoms of PFD are similar to IC. A patient with IC typically has pelvic pain, the pain often worsens with bladder filling. They usually have day and nighttime urination, and their symptoms are affected by foods, in many instances. The patients who have PFD have similar complaints with a subtle difference (keep in mind that PFD can coexist with IC): IC should not normally result in a poor urinary flow rate. One exception is that if you are urinating tiny volumes each time, you will never be able to generate a good force of the urine stream. If you still have a poor urinary flow rate, that is suggestive of something else going on. In a male, you have to consider the presence of the prostate gland, which can also be causing problems. The first focus of attention in a male is typically on the prostate as a cause of blockage.
Constipation can also exist in a patient with PFD. Constipation occurs for the same reasons a patient will have problems with urination; the patient tries to push out the bowel movement, but the muscles around the anus and the pelvic floor muscles are contracting at the same time. The stool sits in the rectal vault.
There are two different types of complaints regarding intercourse: either there is terrible pain during intercourse because the penis is coming directly into the rigid muscles, or there is discomfort the day later. This is commonly seen in both IC and PFD patients.
Many patients have the sense of incomplete bladder emptying. They feel like they have to void again as soon as they are finished. Some patients cannot empty their bladder. Usually patients who have just PFD and no significant IC do not have nighttime frequency. They just have frequency during the day. There is also a typical history of straining with urination. It is interesting to see the number of patients who say they don’t strain, yet during testing that is performed, they are straining quite a bit.
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Thanks leelee, I have gotten more information and help since I have joined this site. I can't tell you how much this helps. I am calling my dr. first thing in the morning. It is almost sad that you have to find things to tell your dr. about. They should at least mention related conditions. I am so grateful that you shared this info.
Melissa,
You are so right, but I have found that Drs want you to tell them whats wrong then they give you meds..Lol, its like you are dg yourself, but pay the bucks just to see them..
I to have found more help on this site..I would have been so alone if I would not have stumbled upon the ICN...
If you need anything just ask
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Last summer I started with a new Uro. He felt that I would not even be able to hold the rescue instillations he wanted me to have, without PT on my pelvic floor muscles first. I had to have four months of physical therapy before I started instillations. Everything was in lock down. I was leaking. I couldn't do Kegels to stop it. I felt like I smelled even though I was changing pads constantly. I was showering like three times a day to wash it all away. The therapist couldn't believe I could still have intercourse with my muscles like that, It actually seemed to somewhat relax me. I have been in a flare for 15 straight months. I can count two days that I went completely without pain meds, they were during PT. My flare worsened when I got the flu three weeks ago and I am sure all the coughing did a number on my pelvic floor muscles. I have a hydro scheduled for Wednesday and then I will no doubt be back in PT. I have had IC since 1993 and noone, not my Uro, not my Primary care, not my Gyno, ever mentioned how the pelvic floor can get involved to wreak additional havok. I was basically bedridden when my new Uro suggested that there may be muscle involvement, I am so much better now. Maybe they don't want to put ideas in our head. I think it's more likely though that they just don't keep up with the latest info. I can understand my Primary not knowing but for a Uro or a Gyno, they just aren't taking the time to pay attention.
I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.
DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.
I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.
I know what you mean Cia, I use home instillations and sometimes the medicine wont stay in my bladder. I thought I was doing something wrong. I have to put the meds. in two or three times before it would stay. I don't think I would have ever known about PFD if I hadn't came to this site. I am almost angry that it hasn't been mentioned by any of my drs. I have had a lot of them. Like Leelee said we pay them a lot they should try to keep up on the newest info. I hope you feel better soon
http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symptoms of PFD and more
Moisture, heat, cold, learning to relax, stress reduction, physical therapy, muscle relaxants, Yoga, and others I can't think of atm but are at that list. What is important to note though if you see physcial therapist that with PFD relaxing is key and strengthening needs to be secondary especially when you have a contributing condition like IC. Good luck!
Faith, Hope, and Love,
Katrina
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
or find me on facebook http://www.facebook.com/kat671?ref=profile Be the Miracle! & Pay it Forward! [email protected] please contact me...I am here to help!
I just wanted to add that PT doesn't necessarily work for everyone. The first time the therapist pressed on just the external trigger points, it set off the muscles in my back and hip so bad I could barely walk. It's been like that for five months - and I stopped PT three months ago. When she went internal (one time) I had breakthrough bleeding. I know it's PFD, but I'd like to have just the symptoms I had BEFORE the PT. Now I'm stuck with this new crud. So...unfortunately, it's soaking and muscle relaxers for me, until we can figure something else out. My uro, uro/gyno, PT and orthopedic doc are perplexed...how does that me ME feel!!??
Be well,
Stephanie
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