Still searching for answers on cause of pain (children mentioned)

I'm new here to posting but have been coming to these forums for info for about 2 years now. I'm a 37 year old Mom of 3. My story is long (aren't they all) so I will try to condense as much as possible. Hoping to find anyone that may have a somewhat similar experience and what type of DR and where are they located that you have had good results from.

Looking back I've had issues since I first got my period when I was 13. Fast forward to pregnancy with 3rd child 8 years ago. Pregnancy was painful, constant heavy, pressure, felt like the kid was just going to fall out. After his birth (c-section after to previous vaginal deliveries) I had a pain in my pelvis that I thought was just from the section. It never went away and went from annoying, to bothersome, to always on my mind. This was in 2005. I increased my life insurance policy before scheduling DR appt. because I thought for sure I was dying. So for years I go back and forth with my gyne doing tests and trying hormone therapy, etc. with no answers. On day in November 0f 2009 I woke up with the absolute worst pain in my left lower back that just radiated everywhere. Called DR and they treated me for UTI as it burned when I urinated. Pills did nothing so I went in, negative culture, can't find reason for pain. Never goes away. Pain is always there but progressively worse with activity as day goes on, heavy throbbing feeling, painful sex, etc. DR order MRI in Dec. 2009. Results come back "normal." Continue to feel like crap and complain to my gyne until she decides that an exploratory laprascopy is the next step October 2010. During which she finds the massive amounts of vericose veins (pelvic congestion) and some adhesions which she takes care of. Am told not sure what can be done, maybe try some physical therapy.

I google the vein issue and find an interventional radiologist in the area that address the issue. See him beginning of November 2010 where he tells me I'm not crazy (yay!) and pops in my MRI scan of 2009 and sees the vericose veins, what he suspects to be adenomyosis, compression of both left renal left iliac veins. So my original MRI was "misread" and he makes sure the report is amended to show his findings. Schedule coil embolization where he does left/right ovarian veins (22 coils) and other veins with sclerosing agent. No relief from the procedure in fact, I feel worse. Schedule hysterectomy for February 2011. Debate on whether or not to keep ovaries (I do as was decided I was "too young" to take them). TVH done leaving both ovaries. Pathology reveals adenomyosis, fibroids, nabothian cysts. End up with UTI after cath comes out and go home 2 days later. Feel like complete crap. Not getting better. I'm wondering what else is wrong with me that I'm not feeling better. Then about 2 weeks later I start running low grade fever. Call DR and she calls in an antibiotic. Pain increases, as does temp. Head to ER. Do CT scan that show abdominal abscess and cellulitis of vaginal cuff. Admitted. Sick as a dog miserable horrible experience. stay 7 days home with PICC line for 4weeks of IV antibiotics. Within days of ending treatment, pain and fever back. Back to ER another CT abscess not totally gone and now also have cdiff. More antibiotics, this time for 6 weeks. Then I'm left to heal. No wants to see or touch me unless there are problems until end of summer.

Debilitating pain still there. IR says next step is to go see the mac daddy of IR's based in Washington, DC. Fly out out there in September for more embolization, balloon occlusion for veins deep in pelvis and iliac compression, angioplasty for compression of left renal vein (nutcracker syndrome). Feel better as the horrible debilitating lower back pain gone but not all pain. It seems that with each surgery/procedure is like peeling back a layer. Takes away some pain/issues but then am better able to tell you were pain is as opposed to when I started and everything was an intolerable pain and I spent most of my time in bed.

So, now I am at least able to function and care for my family even if not to my full potential, it's a start and better than where I was 2 years ago. However, I am still plagues with and am searching for answers: pain/burning with urination, my bladder (at least I think it's my bladder just plain hurts), difficulty passing bowel movements literally I physically just can't push, nothing happens like I have no muscles down there anymore, constant pelvic pain like right above my public bone, pain in legs (also have restless legs can't stand how my legs feel when laying down), I get throbbing in my legs with activity, headaches, nausea with vomiting at time but mostly gagging/dry heaves, don't even think about touching my lower belly, so sensitive, bloating, dizzy. I'm sure I'm missing something.

I said this wasn't going to be long (I lied) I'm just trying to figure out what else could I be suffering from? How can one pelvis have so much wrong with it? Anyone else still suffering after numerous treatments? Looking forward to being more active. Thanks to whoever actually read my sob story.

Wow!! I'm so sorry you've been through all of this.... And to still have pain! As I was reading the first part, I am thinking adenomyosis- then you mention it further down.

Just a few ideas here from my personal experience of what can cause your current symptoms:
Interstitial cystitis
Bladder spasms
ovarian cysts
Granulation tissue on the first vaginal cuff
Spinal issues
And of course the pelvic congestion caused by varicose veins

You are prolly also still suffering the side effects of the antibiotics / cliff, hence the nausea and headaches.

As to who to see.. definitely see the expert you refer to.. maybe a few consult with endo expert, even tho you don't have endo. Also maybe a pelvic floor surgeon would be an idea.

Good luck to you and keep us informed!!!

I think all of us, or most, that continue to have problems for yrs after these surgeries have some sort of autoimmune problems. I have severe pelvic pain, but also have pain all over, now they say I have fibro. I have hypermoble joints which they have found is connected to fibro. And, there is a condition, and I forget the name of it that you have from just having a surgery, it is something like RS--something, as when you just start having pain and feel horrible all the time. I am so sorry for your situation, mine is bad but yours sounds worse. I did have all those dry heaves after things went down hill and I continued to have pain and was so difficult to work, but I attributed mine to panic attacks, and I contimplated suicide but just couldn't figure out an easy way, and I didn't want to hurt my family. I am better now, but it is drugs propping me up, and I finally found a pretty good mix of hormones, there is nothing else for me at this time to do.I've had 4 pelvic surgeries, and a hip replacement, and I am afraid for them to mess with me anymore. At least I am not working anymore, and that is huge, because I was under a lot of stress, and noone understands what you are going thru, and I was on my feet all day racing against the clock, (was a dental assistant)
Good luck to you, believe me you are not alone. I use to be on this site daily for hrs. and learned a lot, thank God for it, but I heard some really bad stories, so sad. I hope you find some answers and recover.