Long term pelvic pain following four surgeries in my pelvic region

I am no longer able to have sex with my husband, and have chronic abdominal pain. It all began with a radical and rare surgery to deliver my son eight years ago. He had a massive tumor on his neck that crushed his airway. The doctors opened my body up wide enough to partially deliver him (keep him attached to my blood supply and oxygen) while they tried to find his trachea. Gradually, over the course of three years, my pelvis became so irritated the only option I had was to have a partial hysterectomy. The doctor found Endometriosis, massive amounts of scar tissue and Adhesions, as well as my uterus attached to my abdomen wall. Around a year after that I had my appendix removed. A year after that, three months ago, I began experiencing increasing pain again. This time I had cysts on my ovaries (the only reproductive organs remaining in my body) and as a result I had another surgery to remove them. The pain is chronic and debilitating! I am insured through the United States Federal Government (Medicaid) and they no longer cover any care from a Gynecologist! I need help! I am looking for any resources, medical and support group help available in the USA. Thank you for your time.

6 Replies

  • Hi I am sorry to hear what you have gone though I also had a problem with childbirth and think now 20 years after this is what s causing my problems I was told at the Time I should have been a section as my tailbone is inverted and the baby was turning out off the birth canal I had that many epidural s that my body was rejecting them I had to had a forceps birth and injections on both sides thank god I had my little girl we thought we were going to lose her but six months later I was rushing into hospital with appendicitis but my right tube was mangled and they had to do a tests then I had a bowel prolapse I have always suffered bad back pain from then now as I am older I have been diagnosed with spinal stenosis of my neck and awaiting m.r.i on my whole spine I been off work for 1 year now I have numbness in my buttocks lower back and down back of my legs I just had a brain m.r.i just yesterday I am at my wits ends as now I have bowel problems with bleeding so I do sympathize with you at present I an just on painkillers no surgery and don't know my outcome yet

  • It is hard to feel so out of control of your own body. I can totally relate to your situation. I too am on pain killers, and my pain management doctor tells me to see a Gynecologist for a solution to my pelvic issues but my insurance will not cover that. I have only been offered injections to numb my pain. The injections only relieve the pain for about a day for me so it is not really worth the discomfort. My pain management doctor is an hour drive from my home. My marriage is falling apart because I am not able to be intimate with my husband. I am also a full time student trying to earn my first college degree. I have no time to try to find a solution because of my homework load! Frustrated!!

  • Where is the pain and what are the symptoms, more specifically? You mentioned stomach pain, but do you know where - like could it be more in the bladder? And are there any other areas of pain, like the pudendal nerve? Urinary issues? You dont have a diagnosis yet right?

    If you are a full-time student, your college should offer health insurance at a very low premium and you can use that to see a gynecologist abd get any other medical help you need. I actually went back to school as a grad student, in part to gain health insurance so I could try to heal my pelvic pain issues. My share of the premium was only $50/month. I did have to see a doctor at the college's student health center first, and while at that appointment I would tell the doctor the name of the gynecologist/urogynecologist I wanted to see in the area, and he would write the referral to the gyn so I could then see the gyn I wanted. Usually the college health insurance is so cheap because you are pooled with thousands of young, healthy college students, so the premiums are low. The school may have also subsidized the costs.

    If you cant get the school health insurance for whatever reason, then apply for the financial assistance program that most large medical practices offer (like the medical offices at your nearest hospital). I qualified one year to have 100% of all of my medical care covered at the local hospital and their medical offices.

  • Try to see a peripheral nerve surgeon, most likely you have nerves trapped in scar tissue

  • BTW a gynecologist won't know how to diagnose any nerve issues, since you had a hysterectomy and your ovaries removed opt to see a nerve specialist if you can. They can also help with pudendal nerve issues

  • Three posts offering solutions! Yeah! i will check them all out, Thank You. I will keep you posted!

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