Frustrated w/drs and severe pelvic pain

scsmith3 · February 2015

Hi. Was wondering if there was anyone else out there with similar issues. Sorry for the rant. I am interested in help and I do not want to be unreasonable. Thank you.

I have had chronic left pelvic pain (5-7/10) for over 3 yrs. during menstruation the pain spikes dramatically (10/10) for 2-3 days. This pain spike has lasted 3 wks with no relief. I can't work, I can barely walk, can't eat or drink much, can't sleep. I usually just deal with it, using natural methods (breathing, etc). I hate drs and taking medications, but am no longer able to cope without some help. I have tried otc, they do not help at all.

I went to the dr after 1 wk of this intense pain. He seemed nice, but turns out he and his staff immediately labeled me a drug seeker. I was cooperating with diagnostics. The only test I didn't complete was renal ultrasound. This is because the pelvic ultrasound was excruciatingly painful. When I expressed this concern to the dr, he told me I just need to deal with it. He mentioned weight loss and i have lost wt, but I am 5'7" 120# and am not able to exercise or eat much due to pain/pressure. I do have a pouch, never resolves due to surgical scars.

I would prefer to get diagnostics done during a 'flare-up' because it would paint a more accurate picture. I am seriously worried about urinary tract involvement, but I cannot tolerate the ultrasound.

Unfortunately, my whining has gotten me no where. I seem to have been dismissed. A wk later, the dr has not discussed the ultrasound results. I have a copy from the hospital. I have an left ovarian cyst, endometrial polyp, and a left adnexial seroma. I believe these are pressing against each other and other structures causing the intense abdominal pain and pressure. With internet research, these are not deadly and shouldn't really be that painful. Maybe I am just 'being a baby' and need to deal with it.

The pain is seriously interfering with my life. I'm only 30 and cannot play w/my kids, cooking dinner is difficult. I can I sleep when I'm too exhausted, but wake a within a few hours. If I eat or drink more than a few bites, I vomit. It is so much worse this time. I am no longer able to cope. This is too stressful physically and emotionally. This dr and 2 others are not interested in helping me. It probly won't kill me so they are not concerned. This doesn't leave a truly painful patient with any options. I am only seeking relief for flare-up, the constant chronic pain sucks, but i can deal with it.

Is pain relief unreasonable? Is it unheard of to have a painful ultrasound? The dr seems to think it a gross exaggeration. The u/s tech wanted to stop and reschedule since the pain was so bad. I asked her to get it over with, in case this episode resolved prior to completion. Any dr recommendations for the SE detroit/flint michigan area? sorry for the long post, thank you

jennifershoo · February 2015

I'm sorry about your pain. Unfortunately, no one here is able to diagnose you. It sounds like you'll have to find another doctor who will take you seriously. This is nowhere normal and I don't understand why 3 doctors don't want to help you. Maybe in their mind the only way to have a accurate diagnosis is to do the pelvic ultrasound. It is painful, but so is your day to day life. You need to rethink that ultrasound. You never know what they can find. Good luck.

2nelune · February 2015

If this is muscular pain, have you sought out a physical therapist? Maybe your muscles aren't working properly and everything is tightening up. I've never had this exact problem, but I've had pain elsewhere that was due to muscular problems and other muscles over compensating to try and correct it.

scsmith3 · February 2015

Sorry, I know I cannot be diagnosed over the internet. I was just curious if anyone else had anything similar.
I did the pelvic ultrasound. That was the basic report is was quoting. I was not able to go through the renal ultrasound, I would like to do it, but right know it literally hurts too much. There is no way I can stay still enough for diagnostic images or measurements on ultrasound.
But maybe, as you suggest, this is just my new level of pain. I will have to adjust to it.
Thank you

ilovemypeekapug · February 2015

I am SOOO sorry! I had a large cyst on an ovary several years ago and it was extremely painful! Thankfully, mine resolved on its own. What specialist did you see? An OB/GYN, urologist, etc.? Mine was diagnosed by GYN and she was very compassionate/sympathetic. I know they can remove them, so you just need to find a different doctor. With pain as bad as you are describing, I would think a trip to the emergency room is warranted (especially when it gets up around 7 out of 10). They could administer strong pain meds to make the ultrasound tolerable for you, too. You do NOT have to live like this. Please don't give up on finding treatment. Your kids need you to be back to 100%! Best of luck to you.

jennifershoo · February 2015

I wish you wouldn't have to adjust to the pain. No one deserves to live in constant pain. Is it possible to find another doctor? It sounds like it's a good idea to have some tests to know what is going on inside of you. In the mean time, to deal with the pain, you can try acupuncture. Of course, it's just a temporary solution, but it's an alternative to pain meds.

ilovemypeekapug · February 2015

Oh, I forgot to ask.....did one doctor actually recommend that you LOSE weight?? You are my height, and 120 # is almost underweight! QUACK! Do not go back to that doctor. Sorry, I am still fuming that you have not found relief. I remember those days of the pain related to cysts. Ugh. Prayers for you!

sad_kitty · February 2015

I can relate to this so much. I have a diagnosis of chronic pelvic pain secondary to sever endometriosis. I am on disability for it (for the last 10 years) and have required daily morphine for it. I have endometriomas on each of my overies right now (and they hurt), and my pelvic floor is dysfunctional due to where the disease was excised in the past. I've learned that you can only "suck it up" for so long before things implode. You should not be dismissed as drug seeking either. Have you or can you get a referral to a gynecologist who specializes in pelvic pain disorders? Can you consult with a physio who specializes in gyno-urinary/pelvic floor structures? Your doctor sounds less than helpful and perhaps someone else may have real answers and solutions for you. Big hugs.

azulvioleta6 · February 2015

You are not getting a good standard of care. So much of what you have described is just wrong.

This sounds very much like an issue that needs surgical intervention. This is not something that you should have to put up with. What you are describing reminds me a lot of how a friend described having a strangulated ovary--if you are dealing with something like that, it needs proper attention.

My suggestion is that you gather all of your test results and get yourself to the largest medical school in your state. You are much more likely to find someone in that kind of environment who knows what they are doing and will treat you with a reasonable amount of care and respect.

scsmith3 · February 2015

I have been looking for other doctors. Gonna try again Monday.

Problem is ovarian cysts are not usually an emergency, they come and go fairly spontaneously. So drs apparently don't feel the need to treat this type of pain. And when it is debilitating, I'm just being a baby. Feels like what i imagine the pumpkin for Halloween would. A spoon scraping the ventral surface of my left hip bone and a bit higher, over and over, gotta get all those pumpkin guts out.

I would like to avoid ER, even with 10/10 pain. If they were to turn me away too, I'm not sure I could handle that.

Yes, their only suggestion was that ovarian cysts are usually weight related... after i lose some wt maybe it wouldn't bother me anymore. Exercise is not tolerable right now and i can't eat any less than i am, so gonna have wait to lose that 5#. My research mentioned wt, but i don't think 5# is really gonna do it and much more than that is not healthy. Maybe that was their way of blaming me for it. Not what I wanted to hear, not what any woman wants to hear.

My research also mentioned no dairy. That is very helpful, already been doing that for couple yrs. I thought the dairy was just upsetting gi tract, maybe both gi and repro.

I really want to continue with diagnostics, maybe the acupuncture can help with the pain enough to get more done. I found a place 10 sessions for $600. Even if insurance won't cover it I'll give it a try. I'm not sure what i'll do if there really is no help.

Thank you everyone, so much for responding. I really appreciate it. I know this is not the right place for it. I'm getting a little desperate. Thank you

bgoddess2003 · February 2015

I have to agree with sad kitty. Your condition is very painful you need a better GYN specialist. Call your insurance or go to there Web site. Do you have other university that your allowed to
go to maybe a teaching hospital will be better.

michellelhodges123 · February 2015

I would definitely suggest different gyn! I had horrible period/pelvic pain..had everything under sun done..pill roulette to try and control..finally at 40 had to have hysterectomy...was never so happy in my life...I hope you get a dr who listens and will search for an answer...

sad_kitty · February 2015

If your pain does reach 10/10, it may be indicative of something serious, so please don't not go to the hospital. When pain is chronic, we tend to get accustomed to it, so a 5/10 or 6/10 for us, may be a, 8 or a 9 for someone who doesn't live with daily pain. When you have ongoing pain that spikes to a 10, your body is trying to tell you something. And if it is related to ovarian cysts, there are so many situations where this can be trouble. Normal rupturing of normal cysts can be painful, but short lived. Usually a few hours of pain max. Feeling pain with ovulation is called mittelschmirtz, and it's not uncommon. Fluid filled cysts/follicles are normal to see on ovaries in various stages of development and size, it's the dense ones visualized on ultrasound that keep growing or are not reabsorbed by the body that are usually a concern. But if you have an abnormal cyst such as an endometrioma, it can rupture/torque the entire ovary. Also sometimes with pelvic pain there is not only inflammatory pain to contend with, but neurogenic pain, and it can become a vicious cycle of one triggering the other (like nerve pain from vestibulitis can trigger uterine cramping for me and cramps can make the the vestibulitis flare up). So tl;dr, listen to your body. If the pain is unbearable, a good physician/triage nurse WILL take you seriously in emergency. I hope you can find the medical care that you need. I'm in Canada so I can't speak to American health care resources, but Google tells me this place :http://www.henryford.com/body.cfm?id=40380 has a pelvic pain clinic (and it looks like they integrate cognitive behavioral therapy in their program - I use CBT myself to help with pain, and sometimes am able to skip medication because of it).

best of luck!

Also, an afterthought....have you asked about being investigated for interstitial cystitis? IC is sometimes seen with some reproductive disorders in women, and can most definitely cause pelvic pain.

Aemely · February 2015

azulvioleta6 wrote: »

You are not getting a good standard of care. So much of what you have described is just wrong.

This sounds very much like an issue that needs surgical intervention. This is not something that you should have to put up with. What you are describing reminds me a lot of how a friend described having a strangulated ovary--if you are dealing with something like that, it needs proper attention.

My suggestion is that you gather all of your test results and get yourself to the largest medical school in your state. You are much more likely to find someone in that kind of environment who knows what they are doing and will treat you with a reasonable amount of care and respect.

I agree totally with Azulvioleta. Fire your doctor, and get a new one. You do not need to LOSE weight!!!! At 5'7" 120 lbs., you are at the very bottom end of Healthy weight leaning towards Underweight. Your pain is not weight-related and that is a total load of BS from a bad doctor. I agree that you need to find the largest medical school in your state to get a decent diagnosis and treatment.

flabassmcgee · February 2015

Have you had a colonoscopy?

azulvioleta6 · February 2015

scsmith3 wrote: »

I have been looking for other doctors. Gonna try again Monday.

Problem is ovarian cysts are not usually an emergency, they come and go fairly spontaneously. So drs apparently don't feel the need to treat this type of pain. And when it is debilitating, I'm just being a baby. Feels like what i imagine the pumpkin for Halloween would. A spoon scraping the ventral surface of my left hip bone and a bit higher, over and over, gotta get all those pumpkin guts out.

I would like to avoid ER, even with 10/10 pain. If they were to turn me away too, I'm not sure I could handle that.

Yes, their only suggestion was that ovarian cysts are usually weight related... after i lose some wt maybe it wouldn't bother me anymore. Exercise is not tolerable right now and i can't eat any less than i am, so gonna have wait to lose that 5#. My research mentioned wt, but i don't think 5# is really gonna do it and much more than that is not healthy. Maybe that was their way of blaming me for it. Not what I wanted to hear, not what any woman wants to hear.

My research also mentioned no dairy. That is very helpful, already been doing that for couple yrs. I thought the dairy was just upsetting gi tract, maybe both gi and repro.

I really want to continue with diagnostics, maybe the acupuncture can help with the pain enough to get more done. I found a place 10 sessions for $600. Even if insurance won't cover it I'll give it a try. I'm not sure what i'll do if there really is no help.

Thank you everyone, so much for responding. I really appreciate it. I know this is not the right place for it. I'm getting a little desperate. Thank you

I've had problems with ovarian cysts--what you are describing sounds like something different. You do not need to lose weight, though sometimes exercise CAN help a little with pain control.

Definitely go to the ER if you are having 10/10 pain. You are not being a baby--something is going on and nobody deserves to live with the kind of pain you are describing. Pain aside, you could have a serious, life-threatening issue and you NEED to get answers.

a_candler · February 2015

I would see a gyno Dr and see if they can help or refer u to a specialists. Sounds like endometriosis or cysts or something.

Frustrated w/drs and severe pelvic pain

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