Please tell me what your pain is like - Pelvic Pain Suppo...

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Please tell me what your pain is like

melodious
melodious

Can anyone tell me what their pelvic floor dysfunction feels like please?

I get clenching feeling down there, pain in groin , low back, hip and sometimes leg. Burning and pulling sensation in vagina. Sitting is painful. It also feels as though i am unable to relax the pelvic floor. Urinary frequency and urgency. The pain is horrendous, it makes me cry. Its been going on in flare ups for 4 yrs. My gp doesn't even seem to recognise it as a pelvic floor problem. She said it is weak pf muscles that cause urinary problems, not tight ones. Only slight relief i get is sometimes eases for a bit after a warm bath.

26 Replies
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I’ve been working with a physical therapist and have made some progress. My pelvic floor has to relax. The stretches and exercise work for a while.

The pain is horrendous at times also. I have the other body part. My pain is usually burning rectal pain which through the perineal to my front. I have to concentrate on dropping my pelvic floor. The butterfly stretch and visualizing dropping the floor works.

Usually I get relief for a few hours. I try to take care in how I walk and bend. This can cause a flare up.

It’s a work in progress. Over the past week, I’ve had about 4 good days. The past 2 days were really bad. I’m still trying to establish my routine.

Bottom line is that the right physical therapist can help.

cassie14
cassie14 in reply to TTDD

My pain is just inside of my vagina. It feels like constant burning and I don’t get any relief from anything but medicine. I’ve tried pelvic floor therapy for a year, no improvement.

TTDD
TTDD in reply to cassie14

Been doing PT for 2 months. Doing the work. Some things have changed but not for the better. I have rectal burning and also when I pee. I’m increasing to twice weekly PT to try other things. Pain is pretty much gone in the morning and activities cause it to gradually get worse.

I think my path will eventually lead to a pudendal nerve block.

Sounds exactly like me, but I got really bad rectal pain on defecation too, and vulvodynia. And my gp said exactly the same thing, that I had ‘really weak pelvic floor muscles’ and to do pelvic floor tightening exercises! (!)- before two physios told me complete opposite that they were too tight ( which I knew because they were permanently tensed). Get flare ups predominantly when stressed. Try and find a pelvic floor physio that can help you, a lot of gps etc have no idea about this.

melodious
melodious in reply to Pixel007

Thanks for your replies. I have read about the "cascading effect" of pelvic floor dysfunction but don't really understand what the term means. Could it mean that it causes other pains throughout the body?

I feel unable to relax my pelvic floor properly at the moment. I also had an anxiety attack this morning, i think because of the pains. I was hot , sweaty, shaky , nauseous and muscles so tight .

It's terrifying, especially when I am on my own. I can' t let go of muscles in pelvic floor, also abdomen and thorax when it is at its worst. Should i rest or try to move despite the pain? Can't go back to physio yet because of covid 19.

Oh okay you can't go to a physio yet so I was one of the lucky ones where my PT didn't shut down I kept going all the way through the covid...and I'm so much better so I hope you can go soon because I think that will really help... I was wondering if you're on any medication or suppositories? so another thing you could try is go download the pathways chronic pain app it's really been helpful for me and it's free... I am on 25 mg doses of cyclobenzaprine muscle relaxer a day and a 300 mg gabapentin at night for the nerve pain and it's really been amazingly helpful to be able to relax my muscles and the subsequent nerve pain that comes with tight muscles... I also have suppositories of baclofen muscle relaxer Valium and lidocaine which I use if I'm having a bad flare up but my flares are getting less and further apart now... oh and see if you can get a hold of a headache in the pelvis book and/ or heal pelvic pain..If you feel like you need to talk just PM me

Bradyy
Bradyy in reply to kalecolbe12

Try Paxil to relieve anxiety

If you go to a pelvic floor therapist you'll get so many answers and it will really help you emotionally too

Thank you. Unfortunately I have to wait until covid19 restrictions have lifted somewhat.

If anyone has any advice that I can act on by myself until then, I would be extremely grateful . I have anxiety coping methods which I have learnt through cbt and mindfulness training, but hypertonic pelvic floor and anxiety seem to feed off each other in my case. If I could ease the pelvic floor I feel that my anxiety would reduce too. That would help so much until I can see a physio.

Blima45
Blima45 in reply to melodious

Hi. Pelvic floor dysfunction can be result of many issues: endometriosis, interstitial cystitis, high tones muscles... provider lump pelvic pain into one group.. pelvic floor PT is great.. as you wait to be seen by one due to covid, I would ask for meds... I find amitryptaline to be helpful for pain and actually it reduces bladder spasms as well to help with urinary symptoms.. I also get suppositories made at a compounding pharmacy... I insert at bedtime either rectally pr vaginally Diazapam ( it is a muscle relaxants). This is assuming your pelvic floor bias a high tone and you are squeezing down there. Sounds like you are. The amitryptaline makes you drowsy and I am able to get sleep at night. Hope this helps.

melodious
melodious in reply to Blima45

Thanks for the advice Blima. I will ask about the medication when I get to see the doc. Take care.

SunlitSky
SunlitSky in reply to melodious

Hi Melodious:

I hope that you are doing better. As for at home strategies, I would say that relaxation is underrated and also really important. It’s good that you do diaphragmatic breathing. Mindfulness is also good. Are you able to take slow outdoor walks? Sometimes slow; not fast is good because it doesn’t cause too much pressure, releases endorphins, and relaxes mind and body.

When can you start seeing your PT again? I have started at home PT and it is a challenge for me but I am making progress.

Also check out the vulvodynia diet, it could help. And Desert Harvest Releveum and Vmagic.

melodious
melodious in reply to SunlitSky

Hi Sunlitsky,

I have downloaded guided relaxation audios and also an hypnosis download specifically made for people with pelvic floor dysfunction. Also doing stretches and exercises for pelvic floor release. Taking 2 warm baths daily. Apparently it can take 6 to 8 weeks for these strategies to start taking effect!! I haven't really noticed much improvement.

Sitting generally makes symptoms worse. Also, I have noticed that when i increased my walking to get the full 1 hour of exercise we were permitted at the start of lockdown, my pain stared to increase. I have cut that down now, not sure if it was the right thing to do tho.

Just wish i could get some relief.

Thanks for your reply.

Best wishes

SunlitSky
SunlitSky in reply to melodious

Stay safe and stay hopeful. I believe that in time you will get well. Have you tried the coccyx pillow (available at Target) or waffle seat cushion.

I agree small chunks of exercise at a time, can work.

I recommend creams because that was also recommended to me and it helps - Med Mama’s Apothecary/VMagic and Desert Harvest (have not tried Desert Harvest yet and can cause discomfort at first due to lidocaine — but that is the next step for me)

Keep us posted.

Agree

Thanks Kalecolbe, you are so kind.

Yes, i have Heal pelvic pain by Amy Stein. It explains a lot about the pelvic floor, although i do still find the pain scary and depressing. I stated the recovery exercises 3 days ago. It's been even worse since then , but that could be due to stretches etc working muscles. I will keep on with them though perhaps go a bit easier for a few days.

I practice diaphragmatic breathing too and this also seems to increase abdominal pain for a few days but gives slight temporary relief to pelvic floor.

Tmi?

I would be really interested to find anyone who gets the tugging and throbbing sensation in their lower vaginal area. I have it just on the right side. Ive never heard anyone else mention it.

Thanks again Kalecolbe I will take a look at the pathways app.

Mine is stabbing and sometimes it feels like someone has a clamp on parts of me and is squeezing it. I get shooting pain down my thighs and my groin hurts. It's pretty bad.

I get a clamping feeling too and chronic , burning groin pain. Thanks for the reply.

Best wishes.

My pelvic pain is solely in the pelvic floor muscles only. It feels like a tightness kind of pressure feeling and can trigger nerve pain feeling for me also sometimes, which tends to feel like a toothache pain there.

melodious
melodious in reply to JoJo012

Thanks for the reply Jojo. I guess people can have different combinations of symptoms.

I had never heard of this condition before i started with it about 4 years ago. I find it shocking that its not more widely known. It's so painful and , as far as i'm concerned, confusing.

Take care.

Hi, i posted myself asking for thoughts but reading your replies im thinking pelvic floor dysfunction may be my problem too?? Sorry to hijack your post Melodious ...For the past 2 weeks I've been having period like pains, hip ache, low back ache and rectal type pressure. They tend to alternate in which is worse from day to day... Ive also had proctalgia fugax for years but just now thinking this may all be part of it too. Ive always had to wee all the time but this is due to my cystocele prolapse. I'm post menopausal. I've seen gp and requested a referral to a women's physio. Gp didnt mention PFD at all and asked if it could be bowel pain not pelvic but my bowels are fine...I've just received letter to go to Incontinence Clinic ... is this going to help or should i try and find a private PT? Could daily long walks and pelvic floor exercises be making it worse? Does anybody have the period type cramping?? Sorry for all the questions...It all eases with walking and is worse when im sitting. Thanks

SunlitSky
SunlitSky in reply to Liggo22

Hi Liggo,

Have you gotten any additional help or received more insight into your diagnosis?

Liggo22
Liggo22 in reply to SunlitSky

Hi sorry just seen this, I went for a pelvic ultrasound / transvaginal a couple of weeks ago. She said all was fine with ovaries and uterus thankfully. I'm sure she also checked my bladder but not sure. Would this be normal procedure on a pelvic scan does anyone know? Prior to this i had found a womens physio and am seeing her weekly . She thinks I have a few things going on...ie. prolapse, hip issue, pelvic floor muscle tightness and also painful bladder syndrome. The period pains have improved a lot since I've seen her and I've stopped doing pelvic floor exercises but I am more conscious of the 'bladder pain ' and feel like its always there to some degree. I'm also trying to retrain my bladder so this causes some discomfort too.

SunlitSky
SunlitSky in reply to Liggo22

Okay Liggo, sounds good. Yes an ultrasound can be used. I am familiar with that. For bladder pains, have you address or ruled out painful bladder syndrome, interstitial cystitis, or IBS?

Good news about help from physio!

Yes I have Interstitial Cystitis, Pelvic Floor Dysfunction and Pelvic Floor Neuralgia. I have urethral spasms.

I will tell you I have burning Coccyx, low back pain, heaviness, pain, bladder spasms, leg and thigh pain, bloated, sitting / standing time of 10 min for walking and sitting, frequent urination, pain in urethra, stabbing , cramping, retention (have to catheter), frequent infections,. I use a coccyx pillow from Amazon Prime to drive. Driving for more than 1/2 hour gives me all over back pain. The more I do like bending over, stooping down , reaching the more exhausted and in pain I get. It's the pain comparable to cancer as research reports. These 2 website's are around the world. The Interstitial Cystitis Association and The Interstitial Cystitis Network. There's a special food app called ICN Food.

Okay I'm the Advocate for IC in my state. I also run the support groups currently via phone since 2008.

I see a **Urogynecologist** You MUST see a Urogynecologist. They do it all. What I've had we can private message each other about. I've run the gammit of treatment. There isn't anything left for me. Most days I lie on my side. Ice for pelvic, heat bladder. I also know how you can gain some relief. There is no cure and remission is possible. It sounds like you have IC, Interstitial Cystitis. I had to go on disability 100% and leave my career.

I started at the ER and went to pain specialist urologist and now Urogynecology. They help the most. I'm going back to physical therapy too. Physical therapy helps immensely.

Demand a referral to a Urogynecologist! I also help folks find the best Urogynecologist. There may be a support group in your area. They are mostly all over the world. The ICN and ICA both have lists of the group leaders closest to you. Physical Therapy is also a very important part of relief. They have physical therapist"s that treat this.

I will be most abliged to help you.

I am in Eastern Standard Time in the USA. The afternoon after 1 Is the best time to message me. Mornings are bad. I'm an insomniac because of spasms. I was getting pelvic floor botox shots 6 each side. Worked perfect for about 3 months. I became ineligible after a side effect made it that way. Insurance covers 2 botox surgeries per year. You have to be under anesthesia and it's about a week recovery from the shots.

Please write to me and tell me if you would like my assistance.

Thank you. I'm sorry and I'll help you as much as I can if you would like me to.

Big Hugs 🤗♥️

Xx

Luna Child

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