Discussion in 'Fibromyalgia Main Forum' started by Butterfly_of_grace, Mar 22, 2007.

  1. Butterfly_of_grace

    Butterfly_of_grace New Member


    I suffer from HORRIBLE Pelvic pain....YES I get Ovarian cysts alot but even when I dont have a cyst Im in agony like I have just had a C-Section (can never forget that pain). Heres a little of my history;
    I am turning 40 this June (YUCK!)
    I had a huge durmoid cyst when I was 18 and had the cyst and my right ovary removed, I have had 2 c-sections, had surgery for adhesion removal (My colon was wrapped around my ovary from adhesions) and tubal ligation and several (lots and lots and lots) of ovarian cysts on my left ovary. My most recent was in november a pretty big Hemmorrhagic Cyst and yesterday I went for ultrasound to make sure it went away.

    now in the meantime for over two yrs now and GETTING WORSE and more frequent, I am ALWAYS in pain in my pelvic region, always feel like I have a huge Ovarian cyst, always feel pain in my bladder, burning, frequency and urgency, pain in rectum, pressure, bloating, cramping, not to mention that going to the bathroom (either just peeing or both if you know what I mean) is extremely painful at times, groin pain, aching, throbbing, stabbing like an ice pick is stabbing my gutt, sometimes intermittant bleeding between periods (not heavy just spotting) IBS with diarrhea and constipation, nauseated all the time, low appetite, not to mention this all has done serious damage to my once wonderful and very actice Intimate life with my hubby. Intimacy is now faced with fear of being in pain for a few days afterwards.I was diagnosed after the second child with Intercystal Cystitis (she will be ten this yr) and I am always having severe burning, pain and frequency of urination with negative results on urine tests for UTI, but OMG the pain and burning is AWEFUL.

    Im so frustrated. I started doing research. One of the things i did find was that ther is a condition called CPP (Chronic Pelvic Pain). Theres no cure, they dont know WHY it happens to women other then trauma to the area can cause it to happen (eg. abdominal surgery, history of ovarian cysts, etc....which is all in my history). ALl the symptoms above including sleepless nights (I never sleep) depression and snxiety (which I get on and off) and severe fatigue (which I always have ) are all symptoms of CPP. I was shocked when I read the symptoms and I cried telling my husband about it because it sounded like me and theres NO CURE and not much understanding of why women suffer so badly. It really left me feeling hopeless.

    never-the-less, I keep getting blown off by the ob/gyn...for the longest I gave up and have just delt with the horrible discomfort but its getting bad and I can no longer stand the horrible pain in my pelvic region. My periods are getting very clotty yet they still only last two days, the pain has gotten real bad where it goes to my back now, sometimes I feel like someone has kicked my groin (crotch) a million times with a steel tipped work boot and really has been aweful. WHats the worst is that it has literally destroyed my intimacy with my wonderful loving husband and I feel SO GUILTY and HOARRIBLE because I cant enjoy him intimitly because of all this horrible pain...HURTS LIKE H*LL!!!!! no matter what, where and when. I use to think it was just when I was ovulating, now its all the time whenever.

    Im wondering if this is all part of fibro? Anyone else have this out there? I am MISERABLE......I CANT TAKE IT ANYMORE...please someone help shed light for me. I keep digging for info on the internet because whe I go back to ob/gyn I want to slam them with questions and I aint leaving until I have them answered.

    thanks for any help!
    [This Message was Edited on 03/23/2007]
  2. ellie5320

    ellie5320 New Member

    I just posted a message similar to yours I get pain from my irritable bowel Dr thought for many years when younger it was appendix yeah right any way my pain feels like bladder etc I am through menopause so no pain associated there
  3. obrnlc

    obrnlc New Member

    hi butterfly, sorry for what you are going through!

    Before I ever even HEARD of fibro/cfs, i started with pelvic pain, and had a history alot like yours, with the surgery on large hemmorrhagic cysts, large benign tumor behind the uterus and thought to be on the other side, it was so big. Also fibroids, which is what you sound like. Sex was a big gamble that he wouldn't "bump" into whatever else was in there and leave you crying and him feeling like an animal for hurting you!

    So for 3-4 years, every few months i would call up gyne and tell them--this must be huge, pressing on my tailbone, etc, you HAVE to get me in! So, then did what most all women do before a trip to the ob/gyn--TAKE A HOT BATH, and all of a sudden--symptoms were gone throughout the whole visit, you end up looking like a nutcase, sono shows small cysts of 1/4 of a cm. or normal ovulation, etc.

    after years, switched to a woman gyn that i worked with, since the pain was so much worse, and again--the sono showed NOTHING THERE, but she at least gave me some pain meds and scheduled an exploratory. I woke up with a total hysterectomy, due to alot of endometriosis, which really wasn't even a problem, although i knew i had it, but she said with the endo best to get the ovaries both out.

    I was OK with that (age 39 at the time--& now when i watch my 2 yr. old grandson--i thank her hourly for that!) and figured ANYTHING to end that BURNING,GNAWING,ACHING pelvic pain.

    BUT--after a week or so, it all came back! and then my "quest for answers" began! Knowing what i know NOW, it was the tightness and pulling of the muscle that runs down through the groin, probably stirred up by previous surgeries a few years back. A few months later (and the recovery time for me was TOUGH, unlike most surg. for me--i had such severe fatigue, i was knocked flat for 2 months) is when the pain became widespread.

    Looking on the internet for info, like you, i was coming up with groin lymph node cancers, etc., and i thought-well at least that is treatable. but figuring THIS out took years!

    If your current ob/gyn won't do anything, get one who will give you a thorough exam w/ ultrasound , but it sounds like you would benefit from a hysterectomy. Does WARM/HOT water, heat pads, etc. help you? If so, maybe muscular, so try not to soak just before you go in so they can see your symptoms, took me (idiot!) years to figure that one out!

    Good luck--L
  4. Butterfly_of_grace

    Butterfly_of_grace New Member

    Im glad to not be alone but I dont wish this on ANYONE....

    obrln - I had an ultrasound yesterday (intravaginal) and I was in excruciating pain from it. The tech said there didnt seem to be any cyst yet Im still hurting today from the ultrasound and I was miserable last night. I get scared thinking OMG I have ovarian cancer because people put things in my head and I have done alot of research on that (scaring myself half to detah of course).

    Anyway, I am going to insist they do a CAT scan. If that doesnt show anything then they need to go inside and check it out. Last time I had severe adhesions they didnt know it until they went in and found it. They thought that the "weird looking tumor or cyst" that showed on the ultrasound a few yrs back was really odd and scary until they went in for a loook-see and found it wasnt a cyst or tumor at all it was my lower end of my colon stuck to my ovary from adhesions.

    Thanks for the advice. I NEED to find someone who will listen. The last OB/GYN I went ot in my group WAS a woman who blew me off. SHe was a newer Doc who really didnt have bedside manner and really didnt listen to me. I am going to INSIST upon either the male Doc who did my c-sections and the last surgery or the woman Doc who assisted in those surgeries who KNOW my history.

    HUGS to both of you. SOrry you guys are in pain too.

    Do you think this is all part of fibro too????

  5. charmcity

    charmcity New Member

    hi absolutely this can be part of fibro. surveys of women with IC/vulvodynia and other CPP syndromes show that fibro and IBS are very often also present, so likely they are part of the same disorder.

    i have IC/vulvodynia. i can totally relate to all of your frustrations. my sex life is non-existant right now because my pain is so intense. i can't sit for more than an hour without being in excruciating pain.

    i've been reading a lot lately about physical therapy for CPP and it can really help. the unfortunate thing is that there are very few practitioners who really know what they're doing. here's some sites for you to check out:
    (definitely order the 4th edition of the book "headache in the pelvis". just trust me on this one. order it.

    also i am on a support group that is very helpful, it's for those who have CPP and are in PT or pursuing it. it's called happypelvis and it's a yahoo group.

    i'd be glad to give you more info if you want to email me or whatever. just let me know. i'm sorry you're suffering. nothing compares to pain in this region.



  6. tngirl

    tngirl New Member

    that your bladder has dropped. That can cause some of those symptoms.
  7. WhatHappen

    WhatHappen New Member

    I was having pain in my pelvic region on a daily basis for years. My physical therapist use the myfascial release on my pelvic and lower back region and I no longer have pelvic pain. Even my cycles are less painful.

  8. charlenef

    charlenef New Member

    i get this and thing i do to get rid of it is sit on a hard chair with your legs apart lean forward and put you hands on the floor you need to hold for about 10 mins if you can do it all at once you can keep taking breaks good luck charlene
  9. 139864

    139864 New Member

    It is not so much "Pelvic pain " for me ,but I do suffer from bladder infections . One of the first symptoms I had for (PBC) primary Biliary Cirrhosis ( autoimmune liver disease ) was intense itching (puritis) when I would just want to pull all my inners out :(

    I still get water infections every so often ( I know that I should drink lots more water than I do ) and I end up having to take antibiotics

    Brenda uk

  10. kellyann

    kellyann New Member

    I have had some bad pelvio problems in the past. i have given birth to 4 children, 2 natrualy, 2c-sect. Anyway, I had a lot of the pain as you described. It turned out I had endometriousis, which is cells from the lining of the uturus get misplaced outside and cause all kinds of terrible pain. I ended up getting a hysterectomy to cure mine. Check it out!

    I hope you find some relief whatever it is!

    Take Care!
  11. tandy

    tandy New Member

    so much of your post reminds me of ME.
    yuk...... I would'nt wish this on anyone believe you me.

    You might seriously look further into Endometriosis symptoms.
    I fought all the symptoms for 2 yrs before I finally got an DX. and,...your chances are higher if you have Fibro or CF. (I have FM)
    They did a Laproscope to look inside and I had it all over my bladder,ureters,colon,uterus,ligaments,culdesac.
    I had all of your symptoms,..& more.

    groin pain,leg pain,clotting,tailbone pain(my butt hurt so bad) pain after intercourse,IBS,peeing all the time...etc.
    bursting cysts a few times.
    The pain is/was horrible.
    please press your doc. for an answer.
    This is'nt normal.
    Good luck~
  12. finfree

    finfree New Member

    I absolutely agree with Julie in that physical therapy can, and often does, help with all that pain. I had all that pain and it's not fun! My PT has helped relieve a lot of that pain.

    Join the yahoo groups, and the one called HappyPelvis. You'll learn alot. I have the Headache in the Pelvis book, Edition 3, and it's very good. Didn't know a 4th edition was out.

    What state are you in? I have a great PT, after trying several.

  13. mymichelina

    mymichelina New Member

    I could have written what you wrote. With the exception of the mentrual part since I have had a hysterectomy. I feel so much for you. And yes there is really nothing they can do. The only thing that has helped me is a patch called Oxytrol. It is intended for urinary control, but if you get the spasms also when you pee this helped me alot! I still have sooo much pain and agony...etc etc. But even a little relief while peeing is a godsend for me.

    My husband has been sooo understanding, and there are other ways of pleasing him but it is just not the same. Just one more thing this disease has taken away from me.

    Gentle hugs to all
  14. sophiekk

    sophiekk New Member

    Seconding tandy's suggestion that you should be checked out by a specialist for endometriosis. I have chronic pelvic pain too and a great endo doc in NYC put me on hormonal birth control to see if the pain went away. It did, so she thinks it might be endo - though it could also be IBS or (I'm hoping) CPP.

    Endo can only be definitively diagnosed via laparoscopic surgery, though, and the surgery can cause scarring and adhesions, so she only recommends it if the pain is severely impacting your quality of life and can't be controlled by the pill or other drugs, or if you're having trouble getting pregnant.
  15. Butterfly_of_grace

    Butterfly_of_grace New Member

    I am comforted by the fact that I now no longer feel alone and like a thank you.
    I called yesterday for ultrasound results which the tech said she didnt see the large cycst anymore but Im still in alot of pain, had my period for two days its gone but OMG tha pain is still here and still bad. I told Doc a yr ago about all this and she blew me off (think I mentioned that). This time Im going to insist they start doing something for me...its really getting bad.

    Thanks everyone for your advice and input. Another thing I think may be causing the pain is that I have very large vericose veins in my groin ever since i had my youngest (shes turning 10 in June). When they get engorged from me being on my feet all day or even when hubby and I have been intimate the pain from the veins is AWEFUL! I am left with this heavy aching and pain "down there"(if ay know what I mean.
    Other times the pain is so bad and it feels like all my insides are going to fall out of my groin (what an aweful feeling).

    Never the less I want answers and relief. Im too scared to go on hormones though...I was told to start hormones to avoid any more cysts and I I get so sick even from the most mildest ones. Everyone around me seems to be getting breast cancer here and that scares me too.

    HUGS and thansk again everyone...Ill post to tell you what happens next. Gosh if I can help someone else thru this nightmare well then Im going to do it.....I felt so alone for so long with this and the suffering is so bad!

  16. tandy

    tandy New Member

    Look up pelvic congestion.
    Not sure if its another syndrome?
    but I was thought to have that before my DX of Endo.

    if I can recall, has many of your symptoms too.
    We have to play dr.,...
    cause sometimes we do better than the drs. themselves.

    Good luck at the gyno.
  17. Butterfly_of_grace

    Butterfly_of_grace New Member

    Which I thought was...the tech said the cyst was gone...too bad I was in miserable pain after it and all night inot the next day.
    I called ob/gyn after I spoke with them about results I really insisted on some attention to this problem that was shoved under the rug last yr. Its going on two yrs or more now and getting next Tuesday I go andits one of the Docs that knows my history but its the guy Doc LOL I like the girl Doc.

    Ill let you know what I find out.

    thanks again.

[ advertisement ]