I'm new here & along with by wonderful OB trying to figure out why my nether-regions are so upset with me.
I am 35, mother of 2. The past 8 months or so my cycle has been all over the place (until 2 months ago - back to 28) & the pressure, fullness, cramping & pinching have gone from a minor irritation to a major disruption in life. (it's vey difficult to run a house & take care of a 2 & 6 yr old, when all you wat to do is curl up & cry). I had a diagnostic lap almost a month ago. My OB found signs of Pelvic Congestion & is leaning toward adenomyosis. The pain, pressure, cramping, etc all seem to be very cyclical. BUT here's the kicker. Randomly, I will suddenly feel like I have the most excruciating UTI in the world for a day or 2, with no infection (tested every single time) then it just stops. I went to the URO/GYN who ruled out any bladder involvement. Has anyone else experienced the UTI symptoms like this? Next step is LSH - which right now I'd take in a second if it's going to make this all stop. Thanks!
Did anyone specifically check to see if you have Interstitial Cystitis (IC)? For instance, have you had a cystoscopy especially one with hydro-distention? Not all women have classic symptoms of IC but UTI symptoms without the presence of an actual infection is a big clue. You can learn more by reading this article: Interstital Cystitis/Painful Bladder Syndrome
As far as Pelvic Congestion Syndrome (PCS), it can cause bladder pain as well. Additionally, it is not necessarily resolved with a hysterectomy. It depends on which veins are involved and how the surrounding veins react when the affected ones are treated. You can learn more by reading this article: Pelvic Congestion Syndrome - Is Hysterectomy the Answer?
Thanks for all the info Weiser!
The reason he sent me to the URO/GYN was to get checked out for IC. He actually had 3 other Dr's come in during the diagnostic lap to take a look at everything too. It took twice as long as it should've because he turned me inside out looking for anything he could possibly find. So as far as the 2nd opinion goes...between the URO, 2 other dr's in the practice & the 1s he called in during the lap...
This as been gong on for a long time now & he is determined to rule out ANYTHING else before doing the LSH. It's just become so frustrating. I would LOVE to be able to enjoy sex again. That's become a huge part of the frustration for me. Timing on this seems incredibly ironic, as for the first time in my life I feel like I can't live without it! Doc says I'm reaching my "peak" & recommended that we get a kama sutra book for positions with less penetration til we get it all figured out. Very embarrassing statement for me to make
This website has been such a blessing. Thank you!
Your pain during sex tells me it's something other (or something in addition to) adenomyosis, like swelling or other symptoms. Adenomyosis is best diagnosed via biopsy (as they did with mine)... and as Weiser said, try everything before LSH! I can't speak much for other diseases which I know little to nothing about... the burning sensation that is classic UTI could be inflammation or infection outside of the urinary tract, but next to it....
Thanks for the support.
Dr had a meet with the URO to discuss findings & info. They are in agreement that it's most likely both pelvic congestion & adeno. The boggy look/feel of my uterus during the diagnostic lap & the visibly swollen veins, along with the pain that can't be controlled evewith vicoden (particularly for a week or so before my period), the clots, the gushing, brown discharge. & it's only a day or so before my period when the UTI symptoms show up & it's only for a max of 18 hrs or so. URO says no IC but thinks it's the pressure from the swelling prior to menses.
As far as sex goes. If I evn get excited or arroused at all I am in instant pain & nauseous. (pelvic congestion) Talk about frustrating! Makes me want to slap him for even coming near me
The big problem with me is that the treatment options are incredibly limited. I can't be on any hormones at all. I am epileptic. Hormomes & my brain don't play nice together, particularly estrogen. Neuro:"Estrogen is like crack to your brain". I'm lucky to have my 2 & won't be able to have more anyway because of the seizures spiking during pregnancy. I'm just ready for this to be done. I'm becoming very depressed. & will wholeheartedly admit that I become VERY obstinate when it comes to limitations at all. I like being busy & physically active so this year has been infuriating.
Find out more today! THANKS!!
Sounds like your doctors are on the right path, and if not, that'll come apparent pretty quickly. I'm glad they're trying to leave the IC out... adenoymyosis and pelvic congestion are more than enough to deal with at once!!! I HATE that 10-14 days before my period... I'm thinking about getting a huge rock put in my back yard so I can go and crawl under it!!
As for sex... if I may, try not to even have sex, or think about it as sex. Do what makes you feel sexy (hard, I know, when you feel like you're getting ripped apart): get a haircut, a new set of lingerie, trade massages. I hope your partner is understanding and can find creative ways to turn you on without the expectation of intercourse! When I feel totally unsexy and crappy, and the expectation of intercourse is there, I go completely rigid and loathe every touch. The guy I'm seeing can spend literal hours just playing with me with no expectations... pretty soon I don't feel so crappy anymore and completely forget about everything--hormones are sometimes the best pain meds, I find!
I hear you about not wanting to be inactive or limited (raising hand and waving over here), but I'm slowly learning to let my body do its thing, to listen to it (though sometimes I just want to leave it lying on the floor and go find a new one), and be patient with it. As I own my own business, I have the awesome ability to take a home day or two if I need to, and either do nothing but drink tea and watch endless episodes of 24, or do office work without having to talk to anyone.
I remember at one point feeling like I was about to become very depressed, and knew that I didn't want to go down that path (been there before), so I sat down and made a poster of everything that makes me feel amazing. When I hate my body and life in general, I go look at that poster and do as many things on that poster as I can handle (swimming, hammocking, tea, wine, cheese, art, taking two minutes longer in the shower just feeling the hot water on my skin... it's the simple things!) Now doing those things has become second nature to me, and I end up doing at least one a day. I don't know how you process, or what things make you feel alive or make you feel like you care about yourself, but I strongly encourage you to spend some time doing them... it feels so weird at first, but it gets addicting
Tab0576, your story sounds similar to mine. Lap found vericose veins in pelvis. MRI confirmed veins and suspected adenomyosis. Had ovarian vein emobolization of left/right ovarian veins (no relief). Then 3 months later had TVH taking uterus and cervix. Relieved some symptoms like cramping, heavy periods, etc. But the pain, heaving, throbbing, painful sex, painful urination were still present. My interventional radiologist sent me to see another specialized IR in Washington, DC. I did this 2 months ago (7 months after hysterectomy). This took away my agonizing back pain, has made sex almost pleasurable but I still have burning with urination and some other issues. I would suggest finding yourself a very good Interventional Radiologist. Someone above mentioned searching at sirweb . org and that's a great suggestion. Make sure you search for "pelvic pain" in the ares of specialty. Just make sure that they specialize in PCS and are familiar with DR. Anthony Venbrux and his treatments and research or you're wasting your time. You can also search here: health.usnews.com/top-doctors . com. Search for Vascular and Interventional Radiologists in your area. Except once you find them close to you you then after to see if they specialize in PCS. If not, don't bother. This is a very short version of what I've been through. Actually just saw my IR today. He is awesome! If you are in IL I would go to see him no questions asked. Happy to answer any questions.