Need Home Care Suggestions. ANYTHING ... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Need Home Care Suggestions. ANYTHING That will help. Alone With Just a Heating Pad! Going Crazy

I have been to so many doctors and specialists to see what was wrong with me. It took becoming incontinent and going to a urologist, she sent me to a PT that worked with pelvic floor rehabilitation. I was going there once a week for manual inner vaginal muscle pressure. Then my state insurance stopped paying for it. I have a pain dr that prescribes me medication and that's it. And that barely helps.

I am reaching out to hear ANYTHING that I can do at home to help. I am single so I will have to do everything myself. Is there any exercise YouTube videos that have helped? Self outer massage? Exercises that your therapist has given you to do at home? Taking a bath is not comfortable, I am thinking of one of those "sitz bath" things that go on the toilet, (I also need recommendations for a good one that is deep so I can also use hot water or steam) I am 122 lbs. I have always eaten good and was healthy before, but any help for constipation would be appreciated. I have added psyllium husks and drink lots of water. Need to get a better donut to sit on. Also I need some kind of "Therawand" I have seen different types, the Intimate Rose one looks good. She also has one with vibration, (although I have already "vibrating" in pain) maybe it would feel good? Need suggestions for that because it is too hard to reach comfortably with my finger. I also read the book "Healing your pelvic pain" that was OK but the exercises were too hard and not enough description as far as outer massage or inner. Meditation CD's?

I guess I have written enough. Cant afford PT. Maybe my insurance will pay for a nerve block. Please, I scan the support network for home care and it just gets depressing. Thank you all! Kat in WA state USA, F. 58

25 Replies

I also take flax seed we grind it up in a coffee grinder and add it to our veggie shake or fruit smoothie...if your in the states look up pelvic pain dr.'s if your going to think about a nerve block that is who you want to do it ...google to see the nearest one to you I went to a dr. Marvel in Annapolis MD he was very good and educated me he listens to you as well which is very important I found that very hard with some dr.'s I saw over the course of 1 1/2 yrs....start there I can tell you a friend of mine in England has had terrible luck with a good pelvic pain dr. she got her diagnoses quickly but no help from their dr.'s so being in the states may help but google pelvic pain dr.'s near me and see what happens but I would start there and do try to stretch just take it slowly I used the crystal thera wand it was very helpful when I was having pelvic floor muscle spasms I do hope this helps you

in reply to pizon

Thank you! I take psyllium and eat steel cut oats, lentils with quinoa and snack on homemade waffles I keep in the freezer that I make with spelt flour and bananas, pumpkin, peaches, no sugar I eat them plain or add a bit of almond butter. I will get some flax seed and grind it at home. How much do you add to your smoothies?

pizon profile image
pizon in reply to

1 to 2 tablespoons you have to play with it start with 1/2 to 1 tablespoon and you can work your way up ... take care

in reply to pizon

I was reading up on flax seeds and I need to get them into my life! I thought they helped with constipation and and a little healthy omegas, (think "Uncle Sam" cereal). The amount of ALA in them and vitamins and other good things it does for you, blows the psyllium out of the park! Thank you!

Www.h3pelvic.com. they make a seat that brings to your perineal areas BOTH hot and cold without the inconvenience of getting wet.

Pretty neat device if you ask me. Seems a bit pricy, but if it lasts more than 60 days and does cold too..

in reply to H3pelvic

I wish I could afford to sit on that thing, Lol! I can't believe someone would buy that! It would need to be modified to really help much.

-Kat

H3pelvic profile image
H3pelvic in reply to

For pain relief long lasting, without opioids or drugs, cant be beat.... what price us that worth qhen everything else does not?

in reply to H3pelvic

Not for me.

Hiya Kat, I was off work with terrible pelvic pain last year for 7 months but now I’m pain free and I put it down to the Curable app and reading Dr Sarno’s book The MindBody Prescription. Check them out! I have my life back and I really hope you can too.

in reply to London80

Thanks! Right on it!...Kat

pizon profile image
pizon in reply to

let me know what you think of this book I haven't read this one

in reply to pizon

I haven't gotten it yet. I was reading the reviews on Amazon and they were kind of mixed. I do think the concept is good. there may be newer books out there, so I might order it used. but for now I want to just keep on doing things that will help, like stretching and meditating, massage. It is easy for me not to do those things, and keep getting more...Like when people want to start exercising and start buying tennis shoes, exercise wear, videos, etc., and never get to doing it! lol.

Read the reviews on Amazon, they give you an idea of what it is about.

pizon profile image
pizon in reply to

well I think that is a good way to think but before you buy you should order it from your library and see it is worth the money take care

Listen to Michael Sealey guided meditations / nice voice to fallow saved me several time from going crazy

in reply to willemine

Thank you. I have got to start listening during the daytime or not too late or I will fall to sleep! I am going to try to listen with headphones. Do you have any faves from his playlist?...Kat

Something with pain in title and one about overthinking are very good

12 years ago I was diagnosed with levator ani syndrome with excruciating pain. After seeing 19 doctors over 2 years, and trying botox injections, caudal epidural, acupuncture treatments, cold laser treatment, electric galvanic stimulation, cortisone shots, many kinds of pain medication and nerve pain medication, specialized physical therapy, & 9 nerve blocks, not much helped. I learned to live with it over the next 10 years by taking gabapentin, nortriptyline, and trazadone at night for pain and sleep, and in the daytime sitting on a cushion with a hole in the back (from Relax the Back), as my job was sitting all day. I took Tramadol in the morning, but by mid-afternoon, the pain returned. The nerve medications help considerably, but I couldn't take them in the daytime, as they cause me to have blurred vision, brain fog, and dizziness.

However, in the last 3 weeks, the excruciating pain that began twelve years ago has returned (and nothing helps), and I was in bed with the heating pad for over a week until I could get in to see my colon doctor (heating pad on high helps to take your mind off the pain, although it does sometimes cause blisters, a minor side effect). He prescribed Baclofen, which helps with the pain, and since I'm retired now, I can take it during the day, even though it gives me the blurred vision, brain fog, and dizziness. ANYTHING is better than the excruciating pain 24/7. As I found they have made improvements since twelve years ago, I am seeing a physical therapist specializing in the pelvic floor/levator pain (internal physical therapy, TENS, dry needle therapy, the wand, and exercises). Sometimes these type of physical therapists are under women's health, as they also help postpartum patients. I'm also trying to get in to see a doctor (who my physical therapist recommended) specializing in pelvic pain/pelvic dysfunction. I've found that you go to as many doctors as possible, and keep getting referrals until you find something that works. Search for pelvic pain/pelvic dysfunction, at teaching hospitals. Although I ran out of doctors and options in 2008, I'm finding more information now, so it doesn't feel as hopeless as when I was first diagnosed.

TF in TX; F71

Thank you for sharing.

So far I have made an appointment with a WOMAN primary DR that takes my insurance. Hopefully she can refer me to a PT that works with pelvic floor rehabilitation (there are pretty many around here that take my insurance) and a urologist and start this whole thing over again, hoping there is more awareness now. This time equipped with more knowledge instead of "I don't know what is causing this horrible pain" but be willing to try anything that may help within reason. I think it is because I have been under stress that it has gotten this bad. PM me if you would like to know about medications I am on.

Thanks! -Kat

in reply to

Also, Thank you, I will check the University Of Washington and see if they have a Women's clinic.

PatientRN profile image
PatientRN in reply to

Hi, I saw your posts and my heart goes out to you as I watch my husband suffer through horrific pelvic pain. He is currently being treated at the University of Washington Pain Center. They are a teaching hospital/facility and take all types of insurance. I hope you find a woman’s center there. Although he has not found relief yet he has found compassionate providers that are very knowledgeable regarding pelvic pain.

Good luck

in reply to PatientRN

Thank you for your kind words. I live in Snohomish county and I do know of a few physical therapist that do pelvic floor rehabilitation up here. My insurance does not cover them but one is IRG Evergreen in Everett. Reaction Physical Therapy, Smokey Point-N. Marysville. Tawny Bridge Pope is in a smaller building next door to the sports therapy for pelvic floor rehabilitation. I saw her 2 years ago, and she sees male clients.

I saw the new woman DR on Friday and she understood what I had, so she is referring me to a women's floor physical therapist.

Good Morning reading thru the discussions I still think you should try to see a pelvic pain dr. he or she dose only pelvic pain it has been my persona exper. that this is the only type of dr. that is educated in the p/n and other surrounding nerves...again I can't do any of the meds but have been working with the herbalist and I do hope the flax seed works for you as well as it has me...the women's p/t was a God send as well but going to an urologist and privet md's did nothing for me but waste time and energy Best of Luck to you

I don't have the money to see a special dr. My only hope is to see someone that my insurance will pay for and look for a someone that as you said, that is educated in pelvic nerves and pain. My old urologist (now retired) did understand what I had and sent me to PT that worked with pelvic floor rehabilitation. So for now I have to start over with a primary DR that can refer me out to someone. I can find someone that works with this that takes my insurance, then ask my primary to refer me. I will call my insurance and they will give me a list of drs that work in specific fields, then I call them and when I find one I get their fax and call my primary dr.

Last time I had no idea what was wrong with me. I just happen to become incontinent and my dr sent me to a urologist understood what I had and sent me to PT.

I had no idea what I had back then. Now I know, I have to start over, so yes, maybe not see a urologist, but someone that will help. I have an appointment today, but will call my insurance, explain my problem and see if they can help me.

-Kat

in reply to

There are some good you tube videos you can watch, with exercises.

Thank you! yes, I do use those too. Lately I have had a lot of stress and it is so hard to concentrate on the meditations, etc.

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