Chronic pelvic pain and pelvic conges... - Pelvic Pain Suppo...

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Chronic pelvic pain and pelvic congestion...

Gezabella profile image
9 Replies

It all started for me while giving birth to my daughter 12 years ago. My uterus ruptured and I lost more than half the blood in my body, I almost didn't make it. I needed an emergency blood transfusion. Within 2 years all my pelvic issues popped up. I had 14 pelvis surgeries and 5 of them were within 4 months. I had a hysterectomy at 25 sending me barreling into menopause. My diagnosis; pelvic congestion. 9 years later I am in no different place than I was when it all started. I live my life with such anger and confusion. Living with pelvic pain isn't ready to love with, it makes me feel so isolated.

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Gezabella profile image
Gezabella
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9 Replies

what medication are you on ? I have found amitriptyline VERY helpful after about 3 months on it...am now on Lyrica...for chronic vulvar pain ..it's not vulvodynia, just nerve pain....

have you gone to a pain consultant?

titosantanov profile image
titosantanov

I am 40 years old man, I've been living with that for 15 years.

kath1000 profile image
kath1000

I can really relate. My pelvic pain started with my son's birth, ten years ago. I have had nine pelvic surgeries. I recently went to a great pelvic pain Clinic(in Toronto Canada ) They look at the physical and emotional side of living with pelvic pain. The Dr diagnosed me with: endometriosis, pelvic scaring and Levator Myalgia. I will have more pelvic physio therapy, steroids injections, she put me on Lyrica and I will see a therapist associated with the clinic to discuss feelings around living with chronic pain. I am also on other narcotic pain medication for when the pain is really bad. Do you have some good pain medication? That is key to having some quality of life. Is there a pelvic pain or pain Clinic you can go to?

Gezabella profile image
Gezabella in reply to kath1000

Yes I do have great pain medication...marijuana. I decided to come off of my narcotic pain negotiation and use that instead. It works incredibly well. I have fibromyalgia too so it really helps to relax all my muscles, including the ones in my pelvis. Amitriptyline didn't work well for me it sky rockets my pulse to dangerously high numbers. My pulse got as high as 160 and lyrica didn't do anything for me. My narcotic pain medicine was 15 mg percocet with no aspirin because I am a hemophiliac so it makes my blood way too thin. I go to a pain clinic in Providence R.I. MY doctor only treats pelvic pain. I got really lucky to find her...she is awesome. She isn't only my doctor, now she is also my friend. I have her personal contact info in case I ever need her.

Joyjoey85 profile image
Joyjoey85

Hi, i could totally relate..i am having various pain around the abdomen,hip n lower back sacrum area after i gave birth through a c-section after which the stitches in my uterus came off due to medical negligence..can i check, how was the issue of pelvic congestion diagnoised? Do u havw symptoms such as lower back pain? It is really hard to parent my son (only 5 mths old) with chronic pain when i cannot even manage myself n depressed.

juliansmom profile image
juliansmom

Being in pain all the time is just flat out depressing and I'm only a year and a half with pelvic pain. An antidepressant helps me with the pain and the depression associated with it. I go to a psychiatrist. Just a suggestion to try anything and everything to make life livable. Exercise, vitamins, therapy, prayer, yoga ,meditation,hobbies,research,holistic approaches...

dknees4 profile image
dknees4

Hi Gazebella; Try to find a urogynocologist or specialist that is familiar with chronic pelvic pain. Your search may take awhile as 95% of doctors have no clue about this disorder. If you are in the UK I have read that St. Mary's is a teaching medical institution and are quite active in treating this problem successfully. In between my pelvic pain flare ups I use a Fentanyl patch. (75 mcg). This controls my pain for approx. 2 1/2 days then I apply a new patch. I have been fortunate to only suffer flare ups every year or year and a half. I have had botox injections but prefer trigger point injections to knock the pelvic spasms out completely, with some physical therapy. The botox injections left me with incontinence. I wish you the best and pray you are able to find proper treatment quickly.

Seeious profile image
Seeious

Interested in the marijuana because nothing else helps. Might try the fentanyl patch. So hard to live like this.

Konagirl60 profile image
Konagirl60 in reply to Seeious

The fentanyl duragesic is a life saver BUT it slows respiration. I would start with the lowest dose 25 mcg. Are you doing any better? Hugs.

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