In constant pain

I am in constant pain and last week had a transvaginal ultrasound which showed markers for adenomyosis, and the doctor also said it is possible I could have pelvic congestion syndrome. I did some research and found I have all of the symptoms, but I also have symptoms of adenomyosis.
Have any of you had your hysterectomy for pelvic congestion, was it one of your diagnoses, and did the hysterectomy stop your pain? I am going in for a paracervical block soon to see if that stops my pain. If it does, then I can schedule a hysterectomy.
I have taken ibuprofen which really helps a lot but went off of it so I can have the block done.
Thanks!!! Shanna

Hello ..
Iam Tarrish .. I am 25 years old . I had my hysterectomy at 24 years old . I had endometriosis , adneomyosis, and pelvic congestion syndrome. I know what kind of pain you are going thru ... *hug*
They took my cervix and uterus in jan 2002. then in aug 2002 i had to have my left ovary removed due to a softball sized mass and i had scar tissue that had gone crazy in there and taken my colon and attached it to the other side of my abdomen. Now here i am preparing for yet another major surgery on march 3. I have had no relief from any of these surgeries. They are going to go in and see what is going on . I have another mass on my ovary so they are most likely going to take it out. I am not sure if this is from endo or what . I asked my doc about the pelvic congestion (vericose veins)coming back .. he said it was unlikely that would be the case . But with multiple surgeries i have alot of scar tissue growing in there ( which nothing can be done about) ... I hope you have better luck than i did . They are sending me to a pain management clinic.
Sending you lots of healing hugs .. and i hope you get the answers you need ....
feel free to email me ..

*HUG*
Tarrish

Tarrish,
Thanks so much for your answers. I am 36 and had a c-section 16 years ago and a VBAC after that. Before you had your hysterectomy, where was your pain? Mine is right over my bladder. I thought I had interstitial cystitis for awhile but have had a normal cystoscopy, no urgency or frequency, no UTI, etc. Then I had my transvaginal ultrasound and it showed the adenomyosis. It is just a constant burning pain where I can't sleep and is making me miserable. Ibuprofen helps a lot and so does a heating pad, but this is no way to live. I hate that you have to resort to going to a pain clinic. Many hugs to you too. Let me know what you find out and I will say a prayer for you for your next surgery. Shanna

Hi Shanna~

Your Welcome
My pain was in both sides and in my back . I knew i had endo because of the laproscopys. but they never mentioned the rest until i had my hyst. It was like a burning but constant pain. It got worse when i had my period and my periods were extremly heavy and lasted about 2 weeks .. YUCK huh

I am now wondering from your last post about scar tissue from your C section. I had alot of scar tissue from having my hyst abdomanally. That is one of my major problems now. I have had 2 abdomanal surgeries where they cut me open about 6 inches both times in the past year . I would talk to the doc about that being a possiblity with you . Your doc should be able to go in thru a small inscision in your belly button and take a look around to see if maybe scar tissue has something to do with your pain.

By any chance did you have a tubal ligation?


feel free to email me directly if you wish at sweetiette@hotmail.com

lotsa healing hugs
Tarrish

((Shanna)),
I have no personal experience with Pelvic congestion but did have Adenomyosis prior to my Hyst. Like Tarrish, I also suffer from Extensive Adhesions (Scar Tissue) that causes me severe pain. I underwent 2 additional surgeries for complications from those but no relief from the pain...I have been seeing a Pain Mgmt Dr since July 2000. Due to the risks, more surgery is not an option...
If you will do a search of this site using *Pelvic Congestion Syndrome* as the keyword, you will turn up several threads from others who have suffered this as well. Here are some links & info I have on Adeno & Pelvic Congestion:

adenomyosis ~ endometriosis interna, uterine endometriosis, internal endometriosis
What are non hysterectomy treatments for adenomyosis?

	Quote:
Gonadotropin releasing agents (e.g., Lupron ®) can be used to treat adenomyosis but the problem is that the adenomyosis seems to recur after discontinuing the therapy. It can be used, however, to reduce the amount of adenomyosis and then the remaining areas can be resected if, for example, a woman wants to get pregnant (18). A progesterone intrauterine contraceptive device can also be used to improve irregular bleeding and avoid hysterectomy (19). The question comes up as to whether endometrial ablation might be a treatment for adenomyosis or perhaps could it even make it worse? This was looked at in one study and they found that endometrial ablation had about the same success rate of improving heavy menstrual periods (about 60%) whether or not adenomyosis was present (20). Thus if heavy bleeding rather than menstrual cramps is the main symptom of adenomyosis, then endometrial ablation should be considered as a treatment. Hysteroscopic endometrial ablation can sometimes remove superficial adenomyosis but in order to remove most focal adenomyosis areas that are deeper, either laparoscopic myometrial resection or open myometrial resection is needed to get rid of symptoms (21). Is hysterectomy a very successful treatment for adenomyosis? One would think that hysterectomy would cure the pain in 100% of women with adenomyosis undergoing this surgery, but in truth, studies have not looked specifically at the pain cure rate for women with adenomyosis undergoing hysterectomy. Overall, when pelvic pain is considered to be uterine in origin, hysterectomy significantly improves pain in 75-80% of the cases (22, 23). Conservative surgery for adenomyosis is about 50% effective (24), so it is still likely that hysterectomy is more successful in treating it even though we do not know for sure what the success rate of hysterectomy is. It is probably that hysterectomy is at least 80% or more effective. For all types of chronic pelvic pain, non surgical therapy can have good cure rate although not as high as hysterectomy (25). Cause is basically unknown although there seems to be an increased incidence associated with any child birth (5), pregnancy terminations (6), Cesarean sections 7) and and even tubal ligations (8). It would appear that any trauma to the uterus may increase the chance that endometrial tissue becomes relocated from the uterine lining. Unnecessary studies Computerized axial tomography (CAT scans) are not sensitive enough for imaging adenomyosis. Endometrial biopsy is not used to diagnose adenomyosis. It just picks up the surface endometrium and not pockets deep in the myometrium. It may be indicated to rule out other intrauterine causes of bleeding, however.

Adenomyosis Disease Profile:
http://www.wdxcyber.com/dxppn011.htm

Adenomyosis - An Internal Uterine Endometriosis:
http://www.wdxcyber.com/npain09.htm
http://www.nlm.nih.gov/medlineplus/e...cle/001513.htm

Women: You Have Alternatives to Hysterectomy:
http://health.discovery.com/centers/...terectomy.html
http://www.drdeljuncojr.com/adenomyosis.html

Women and Pain:
http://health.discovery.com/centers/...pain/pain.html

Hysterectomy: Reasons To Have It, Reasons To Avoid It:
http://www.estronaut.com/a/hysterect...ternatives.htm
http://www.newshe.com/articles/hysterectomy_3.shtml

http://www.pelvicpain.org/html/pelvic_congestion.asp
http://www.inletmedical.com/html/pel...n_syndrome.htm

Pelvic Congestion Syndrome Treatment Options: http://www.dyspareunia.org/html/pelv..._treatment.htm
http://www.biocure.com/whatis/pelvic.html
http://www.wfubmc.edu/rad/pelvic/index.shtml
http://www.fpnotebook.com/GYN154.htm

Good Luck Shanna Please keep us posted on how your doing..(((hugs)))

I haven't been diagnosed with adeno, but I do have endo, and I know pain! :hair:

The pelvic congestion syndrome questions caught my eye. I used to work for a vascular surgery group, and apparently pelvic congestion syndrome often goes undiagnosed. I would ask your doctor if there are any interventional radiologists in your area that perform 'coil embolization.' (I'm trying to remember if it's called pelvic vein coil embolization or something else, but I know the 'coil embolization' is definitely part of the name!) I am not a physician, so I can't give you all the details, but I remember the women who had it done were amazed at how it had helped.
Again, this may not be the right treatment for you, but I don't think you have anything to lose by asking.

Time for me to take a pain pill and get to bed! Good luck and keep us posted!
s
Beth

Thank you all so much for your helpful replies! I have had a really good week (ovulation time) and am wondering if things are going to flare again soon. If it does, I will be having the paracervical block, etc. It seems like ever since I loaded up on ibuprofen and used a heating pad, my pain is way better, but this may just be my one week a month without pain. Wishful thinking!
I read about the coil embolization and I think I would just rather have a hysterectomy because of the adenomyosis also. This is all so shocking because I went from thinking I was having recurrent vaginal infections or UTI's to being recommended a hysterectomy!

Hugs to all,

Shanna

(((Shanna))),

Good Luck in your decision & research ((Shanna)) IMO, when faced with this surgery or any other, we should inform & educate ourselves on all the possible outcomes. So when we do reach a desicion we can go into it well-informed Please keep us posted..my prayers are with you...(((hugs)))