05/17/2017 at 6:13 pm #11006
quick backstory: have been suffering with chronic pelvic pain for 5+ years now. Currently working with high level physical therapist for 14 months now, but nothing is getting me any permanent relief. Have seen at least 15+ doctors, 5 different urologists. Had a penile ultrasound performed, Colonoscopy performed, MRI + Ct of abdomen/pelvis, and no test has yet to show anything significant. Dr’s at Rush University identified tight pelvic floor muslces, leading me to my physical therapist. I experience pain constantly, with sexual activity severely worsening it. One aspect of the pain is largely in the penile area. In addition, it feels as if there’s a constant pressure to the left of my genitals near my pubic bone that is extremely sensitive and coughing bothers the pain immensely. When the pain is at its worst, the constant sharp burning sensations are rather crippling both physically and psychologically. All the dr’s in my HMO have done nothing for me, my 3rd new PCP just referred me back to the same urologist I saw a year and a half ago because she said the area I have pain in has to be a urology issue. My HMO is just sending me in circles; the only reason I was diagnosed with pelvic pain in the first place was because my family spent a lot of money out of pocket going to Dr’s at Rush University who provided some insight. My physical therapist, who has been working with pelvic patients since the 80’s, is very suspicious about the possibility of a hernia. I am worried that the Dr’s within my insurance coverage are being very dismissive about the possibility, because there is not a big lump or anything like that. From what I understand, hernia’s can present themselves in a multitude of fashions.
I came across Dr. Towfigh online but I am located in Chicago and although I wouldn’t be completely opposed, Beverly Hills is quite a distance. I really would like to meet with some sort of specialist who I feel confident could make an accurate diagnosis one way or another. Does anybody know of any specialists in the midwest who may be able to help me? I have seen Dr. Towfigh’s user account comment on other threads offering to point people to local Dr’s, am thinking about PMing that account or possibly calling her practice as well to see.
05/17/2017 at 8:48 pm #14724mela414Member
Because I have interstitial cystitis and PFD they never looked outside the box. The pain was debilitating especially after BMs. My pelvi pain dr gave me a bunch of trigger point injections which made things worse and also sent me to PT which crippled me. I started to think outside the box and wound up going to a sports hernia doctor in NYC who did not accept insurance so I had to pay for the consult.
He quickly told me I think you have a femoral hernia. He sent me to his hospital for an MRI with valsalva maneuver and calls to tell me I had an incarcerated femoral hernia.
You can do a search in this site for doctors in you area. I’m sure someone will respond with the name of a reputable doctor for you to go to and have this checked.
Be persistent. Don’t give up. I knew the pain was more than just PFD….which is painful in itself… but this was different.
best of luck. Please keep us posted
05/18/2017 at 10:47 pm #14728Chaunce1234Member
rbh05, I’m sorry to hear you’re going through this.
Perhaps reach out to one of the following doctors (or all) that are somewhat regionally close to you, these are doctor names that come up frequently on these forums:
– Dr Paul Szotek in Indiana, his website is https://www.indianahernia.com/ and phone number is 317-660-5362 or 765-655-2538, he sometimes answers questions on these forums and knows Dr Towfigh so is presumably familiar with some of her diagnostic protocols.
– Dr David Grishkan in Ohio is also a midwest hernia expert, phone number is 216-591-1422
– The east coast has other noted groin/pelvic/hernia docs, in NYC is Dr Brian Jacobs, in Philadelphia is Dr William Meyers at Vincera Institute
Here are a few generic ideas, this is just advice from a fellow patient and I am not a doctor:
– Request a dynamic ultrasound with valsava of the painful area in the groin, searching specifically for hernias, this is fairly cheap and most insurers should approve it
– You may want to request a dynamic MRI with valsava, Dr Towfigh has research that backs this up as another detection mechanism for hernias. A dynamic valsava imaging may show something a standard MRI/CT won’t. Also be sure whoever the radiologist is checks for other issues with hip, pubis, core muscles (sports hernia), etc
– When did the injury / pain first occur, and was there a related event?
– Where is the pain distribution?
– What makes the pain worse?
– What makes the pain better? Anything?
– Have you tried anti-inflammatory course? Nerve blocks?
– Gather detail about what you have tried for treatment so far
– Gather as much detail you can about the pain, where it is, what makes it worse / better, what caused it (if anything)
Also be sure to rule out things like core muscle injury / sports hernia, hip issues, bacterial issues, etc.
Good luck, keep us updated on your case.
05/27/2017 at 4:06 pm #14743
Some insight: inguinal hernias can be the cause of pelvic floor spasm.
Pain with sex and with coughing can also be seen with inguinal hernias.
i agree with the nearby surgeons listed by Chaunce… always full of helpful info.
i can also help review your history and imaging looking for an occult inguinal hernia. Is an online consultation.
05/28/2017 at 6:18 pm #14757quote drtowfigh:
First off want to thank you and everybody else who has responded to this thread thoughtfully. So i had ct scan and mri of the pelvis/abdominal region, I can definately get that imaging to you. I tried contacting your office through your website about an online consultation, how would you like to go about that?
The Indiana hernia clinic also looks fairly promising considering its only 4 hrs from my house, was going to contact them about a consulation as well.
You appear to be one of the top Dr’s in the country in regards to these types of issues, I would feel incredibly confident if you were able to review my case.
05/28/2017 at 7:12 pm #14758Chaunce1234Member
rbh05, you’re very welcome I hope some of the information shared here is useful. Do you mind sharing a little more about your case? Age? General health? Onset of symptoms? Was anything noted in your pelvic/ab imaging scans? Did you get any imaging with valsalva?
Please keep us updated on your case, symptoms, progress, and decision making. Best of luck!
05/30/2017 at 1:28 pm #14762quote Chaunce1234:
Hey chaunce,sorry i completely floated over that part of your message!
i am age 21, my pAin slowly started at around age 17. No injury or anything, just slowly began devloping pain after ejaculation that to this day has been worsening. The only significant thing that happened at that point in my life was I started working at a very stressful place and absolutely hated it. I was a gamer as a kid so saw little physical activity until I started exercising around 18. Was never really overweight due to crazy metabolism, couldnt necessarily say my diet was good in the past. The mri showed free fluid in the pelvis, and the ct scan showed some thickening in the colon and rectum. Colonoscopy showed a perfectly healthy colon. No imaging with valsalva. Have lost hope in the doctors within my HMO, they havent really done much anyway..
05/31/2017 at 10:11 pm #14763
I have reached out to dr towfighs office and the indianaherniaclinic office both through their websites for online consulations and nobody has responded, 1+week for dr towfighs and 5+ days for indianahernia. Does anybody know what I can do?
06/01/2017 at 12:09 am #14764
06/03/2017 at 6:45 am #14771raindropMember
I was diagnosed with a left inguinal hernia a month ago. I’ve had pains on and off (now more constantly) for almost 4 months. Three days ago, I noticed a tiny lump smaller than a grape on my left side right where the line to my pubic bone starts but about an inch to the left where they said I had the hernia more or less and another lump the same size and feels the same way right on top of my public bone. the second lump is in the middle on top of my vagina between my two labia. First I thought it could be a pimple but it is not. Could I have a hernia right in the middle there too? I am so worried about my hernia or hernias becoming incarcerated that I can’t sleep at night. I didn’t feel these lumps for sure when I got the diagnosis. I get pains on the left side now all the way to my thigh, the back of my knee, and the big toe. When there is any weight on my left leg it hurts. I have a hard time finding a comfortable position to sleep in because having my legs too close together tightly also hurts. left was hernia diagnosed by valsava during ultrasound.
06/03/2017 at 3:46 pm #14777
Have you seen a surgeon? It seems most of your questions and concerns would be answered if you had.
Sounds like you have a left inguinal hernia. That is based on many of your symptoms and it’s proven on ultrasound. It would be very uncommon for a female hernia to incarcerate and/or strangulate.
Dont worry too much. See a general surgeon to get diagnosed and have your questions answered to alleviate your concerns.
06/03/2017 at 4:05 pm #14782raindropMember
I’m glad to know that it is uncommon for a female hernia to incarcerate. I was so worried about that. I had been hoping to find a surgeon who might be able to repair my hernia without mesh. Thank you again.
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