Pelvic pressure, hyster 3 years.. Need advice please

B123
B123 Member Posts: 730
edited September 2016 in Pain

I had a hysterectomy 3 years ago leaving in cervix only. Along with removing gallbladder at same time. I have had reoccurring UTI and also feelings of a UTI that was negative. Pressure in vaginal area like everything is going to fall out.When treated with macrobid, feels better and goes away for a while then comes back. I also have IBS constipation that I control well but does trigger every so often. I also have some minor spasms where gallbladder was and heartburn and nausea. Several docs tell me it's a minor prolapse. I also have low back pain Off and on

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2016

    Hi B123,

    We don't have much advice for you, but wanted to send our positive thoughts and healing wishes!

    Hoping you feel better soon,

    --The Mods

  • Jesika63
    Jesika63 Member Posts: 78
    edited July 2016

    Have you had a CT done or work up. I also had LLQ pain on and off. Was treated 2x and pain would go away and come back. My GP finally admitted me to the hospital where a CT and full work up was done. I have Diverticulitis (infection ). I also had a total hysterectomy about a year ago so i thought that was still healing but it had nothing do with that. Hope you feel better. If you have not been worked up maybe you should consider asking them to do so. Pls let us know what happens.


  • B123
    B123 Member Posts: 730
    edited July 2016

    jesika63, I'm sorry.. Can I ask what they did for the divirculitis? I had a CT scan last year and nothing showed up? I am now taking Azo, it's helping a bit.

  • Jelson
    Jelson Member Posts: 1,535
    edited July 2016

    might you have a cystocele? http://www.mayoclinic.org/diseases-conditions/cystocele/basics/definition/con-20026175 which is not an uncommon side effect of a hysterectomy but also a side effect of simply aging.

  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    Hi there. You could have interstitial cystitis. It a chronic condition that mimics a UTI. Pelvic pressure is a common symptom. Your profile doesn't show that you are on anti hormone treatment but lack of estrogen is a major factor. There are a few different meds and a diet that can help interstitial cystitis. Good luck and keep us posted...

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited July 2016

    what's the diet that helps interstitial cystitis?

    Hope you find some relief and a benign cause soon. Lack of estrogen can play havoc.

  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    Foods to avoid for interstitial cystitis include alcohol, caffeine, sugar and spicy foods. Hope that helps!

  • B123
    B123 Member Posts: 730
    edited July 2016

    I think it is IC, all the symptoms mimic everything for past 3 years off/on, this time around it just won't go away.. 7 weeks, I'm in pain, especially when bladder fills up even a bit, low back pain too. Frequent urination and urgency. I have gone to so many doctors with a negative UTI result but they give me macrobid. The only Doctor that even suggested it was IT is the urgent care doctor, which now makes sense. I feel it in the bladder and up the urethra into my kidney, but when I take Azo, the symptoms go down drastically. If I had known this, I would have rethought a hyster. I am on arimidex currently dtad. I have an appt at a different gyn wed, I hope it's an easy diagnosis and treat, does anyone know? I'm going away next weekend and need relief fast. Thank you for the diet info, makes sense, coffee is my downfall.

  • B123
    B123 Member Posts: 730
    edited July 2016

    can I also say, THANK YOU to all of you.. You always respond and always have answers! I can't tell you enough how much that means to me... ❤️


    If anyone here has experienced IC and how it was diagnosed.. Via symptoms or is there more? Can you please share.. I'm so worried and tired of this plus taking my kids away on vacation soon..I can't go like this.. Need something to help with pain..

  • corky60
    corky60 Member Posts: 726
    edited July 2016

    You should see a urologist. I had a cystoscope and he said there were no signs of IC but there was inflammation. I have many of your symptoms. He prescribed Uribel which you can take longer than Azo. Also Flow Max which helps with urine retention. I also took Macrodantin for 3 months as a preventative. I'm 63 and he said that IC was rare in women of my age. The thing is I still have pain off and on so am seeing a vulvo-vaginitis specialist this week.

  • B123
    B123 Member Posts: 730
    edited July 2016

    corky60, how does the cystoscope work? Is it quick and easy or painful? What causes the inflammation?? This is terrible! So they don't just prescribe something off of symptoms?? Sigh... I'm sorry your still having pain. Do they have any idea why

  • corky60
    corky60 Member Posts: 726
    edited July 2016

    A cystoscopy is an in-office procedure. You get a little numbing cream on the urethra and the urologist passes an endoscope into the bladder. It's very quick and painless. I was sore a bit at night when I stretched out in bed. The dr. looks at the computer monitor and you can too. He looks for cancer and other things. He noticed a couple of areas of inflammation. I saw the dr. first to discuss things and then had the cystoscopy a month later. He thought the inflammation was caused by repeated UTIs. He recommended the IC diet even though I don't have IC. Coffee is a big no-no. No idea why I'm still having pain but my gyn recommended that I go to this specialty clinic at the university to be checked out. I've waited nearly three months to get in.

    You can ask your gyn for a pain med if you are having enough pain, just to get you through your vacation. There was a one month wait just to get to see the urologist here. I will let you know what I find out at the clinic.

    Just re-read your symptoms. Referred pain? Need to see a gastroenterologist? You have lots going on but the gyn is a good place to start. Tell him everything.

  • B123
    B123 Member Posts: 730
    edited July 2016

    corky60, as I am drinking coffee, I am reading this... Down the drain! Thank you for the info, you have been so so helpful. I am certain that I am dealing with the same as you. I have had many urine tests and paps. A CT scan last year, no signs of cancer, thank god. So I'm sure it is IC or inflammation. Just another thing to add to the check list... I go to the gyn Wednesday, will let you know. And will def ask for pain meds to get me through. Ironically the bladder is finally calming down toda, after 7 weeks of this!! Thank you and feel better!

  • B123
    B123 Member Posts: 730
    edited July 2016

    btw.. They do tell you on the spot what they see? I don't have to wait in suspense another week or so for results, do I

  • corky60
    corky60 Member Posts: 726
    edited July 2016

    At the cystoscopy the urologist told me immediately what he saw, there was no waiting.

  • cs0600
    cs0600 Member Posts: 13
    edited July 2016

    Don't want to scare you but I had most of the symptoms you are describing and had de novo stage 4 ILC in my omentum and surrounding area. What finally made them do more testing was fluid in my pelvic area during an ultrasound. I had a hysterectomy in 1985. You may want to ask for an ultrasound or a CA15-3 blood test just to be safe.

  • B123
    B123 Member Posts: 730
    edited July 2016

    What!?!?! You did just scare me...more then you even know! What does that mean?? I have had CT scans just over a year ago, nothing. I have had this going on since the hysterectomy 3 years ago. It comes and goes every 5-6 months. Blood works has been normal, urinalysis normal. I can still have de nova???

  • cs0600
    cs0600 Member Posts: 13
    edited July 2016

    B123,

    I'm so sorry! I didn't mean to scare you but want to make sure that women with a history of breast cancer who have symptoms like ours could potentially mean that the cancer has moved as in my case. I just want you to be comforted by either a tumor marker blood test or an ultrasound if this has been going on for a while. It took me 11 months to figure out what was wrong with me and I received so many false diagnosis in the interim.

  • dtad
    dtad Member Posts: 2,323
    edited July 2016

    B123....while of course their is no guarantee, the fact that your symptoms started after your hysterectomy IMO is a sign that it is hormone related interstitial cystitis. However if you are worried look into it further. I guess those of us with a history of bc can't be too careful but we have to keep in mind that not every symptom we have means recurrence. Do what you are the most comfortable with. Good luck and keep us posted.

  • B123
    B123 Member Posts: 730
    edited July 2016

    cs0600, Thank you for sharing your story and experience, I am very sorry for what you have been through. I have very high anxiety and can only take so much so I apologize for my response. I pray that you are healing and safe.

    Dtad, thank you for the reassurance, I am going to another gyn tomorrow. I will pray she has answers.

  • Sara536
    Sara536 Member Posts: 7,032
    edited September 2016

    Hi, B123, I wrote this up and then noticed that you haven't posted in a while. I hope that means that you have found the answers you needed and all is well with you. I'm going to go ahead and add this just in case anyone else following this thread could benefit from my experience.

    Someone suggested the possibility of a cystocele. Years ago I had pelvic pressure, frequent urination, urgency, even a buldge at the entrance of my vagina, tampax wouldn't stay in for long, and it came out curved. It freaked me out because I had never heard of anything like it. My gyn diagnosed "mild " cystocele - no problem, and sent me on my way. I went back a week later and asked her to examine me while I was standing up because gravity makes a huge difference - it looks and feels like something is falling out and I felt she wasn't taking it seriously. (Naturally, I assumed that I had a tumor the size of a grapefruit.) This time she told me that she had a cystocele herself, a lot worse (possibly because she had given birth 4 times) and was putting off surgery as long as possible. She then pulled out a cart with many sizes and shapes of pessaries. (silicone devices of all sizes and weird shapes designed to keep your bladder and/or your uterus from falling into your vagina because the vaginal wall has become weakened.) I tried several, they felt terrible and some felt like they had sharp edges so I decided to just tough it out. So 3 or 4 years go by. Now it is out the bottom (unless I am lying down) the exposed tissue is drying out and painful, I can see my cervix and I have to sit down very carefully. So now I go to a different gyn. He tries to pressure me into getting this miraculous new surgery involving mesh implants, robotic surgery and a morcellator. I say I'm willing to try a pessary again. He says that no one uses them anymore. He calls in his surgical friend and they say I'm a good surgical candidate. I ask for a pessary to use while I think it over. The gyn looks at the surgeon who says, "Give her a #3 donut."(no sharp edges) The gyn finds one in his back closet and it fits perfectly, I can't feel it when it's in and I can remove and replace it by myself. It worked for years but I eventually had to get a larger one. PS: The mesh kit he wanted to use was the one by Gynecare that eventually was the target of lawsuits because use of a morcellator is suspected of spreading cancer when it minces up a previously undiagnosed uterine cancer. See 'Gynecare Ethicon Suit' The surgery would have cost thousands of dollars. Pessaries cost a hundred bucks. Follow the money? I say, "less is more" and always "QUESTION AUTHORITY"


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