This may gross some out, and guys I am sorry in advance if this makes anyone nervous or TMI.
One of my diagnoses is ovarian remnant syndrome. This basically means that if any ovarian tissue is left in my pelvis, it tends to grow into another functioning ovary. For me personally that means ovarian cysts that are cyclic or grow into a mass or so large they cause torsion or bleed and require surgical removal of the regrown ovarian tissue. I have had 3 functioning ovaries removed since 2010. My last removal was October 2011, three weeks after my wedding.
Some of my symptoms of the ORS in the last 3 times were PMS symptoms of mood swings, increased pelvic and abdodminal pain, cramping and burning endometriosis pain increasing, sore breasts and cyclic acute pain growing into constant acute pain within a few months.
This time the pain did not gradually grow, it came on full force. Part of the chronic pain problems that ORS causes for me have to do with my endometriosis and adhesions. The endo causes inflammation and pain, and adhesions grow because of inflammation, infection, and organ or pelvic tissue injury. The adhesions are scars that grow on my organs, gluing everything together and to my abdominal muscle wall, spine, and pelvic floor. That means the ovarian tissue is growing in places that have no room for it to grow, and as its size increases or it begins functioning, it pulls on adhesions that pull on entrapped nerves, bowel, bladder, colon, and possibly diaphragm. It also means that with the hormone changes, the endometriosis can spread further, leading to more adhesions.
The only treatment available to me is surgery to remove the ovarian tissue. This has not been successful 3 times, and my previous surgeon discharged me calling me cured, saying he did his best and nothing further was wrong with me, but I should find an adhesion specialist. I can't find an adhesion specialist or surgeon that will take my insurance, accepts payment arrangments, or will take my case. I was labeled with "frozen abdomen" in the last surgery by the discharging surgeon. He just neglected to tell us this, he neglected to tell us a lot that I had to find out on my surgical and office records.
So with the new ovary growth symptoms, the pain is at an intolerable level and I don't know of a single doctor who knows what to do with me. The gyn surgeon who removed it 3 times before seems to view me as an embarrassment to his practice or his surgical technique, and will not see me, saying it is impossible to have grown back again, and if I can prove it, he may consider providing surgery only. I refuse to go back to him. With Medicaid as an insurance, I technically can't leave the state of Pennsylvania for medical care except in an emergency during a trip.
In the meantime, I can't do anything except crochet. I can't even do my deep breathing exercises to cope, because now I have severe chest and shoulder pain on my right side while deep breathing. I can't cope with this much longer, and don't know where to go or what to do. The ER will do an ultrasound, drug me up, and refer me to the surgeon I had before. My PM doctor is trying to help, but told me that there are no specialists in PA who have the ability to help me, and it may just end up needing emergency surgery like the last 3 times have required. I am lost and almost hopeless. I feel angry at the many doctors who have cut me open with no thought to what it would do to me down the road, seeing me as a freak of nature that they just had to look at how screwed up I am inside. I am disgusted and more than a little hormonal. I can't live with this level of pain, and my PM doc doesn't think that increased doseages or changing meds will help as its acute pain my body is using to tell me something is wrong inside.
As much as my husband loves my increasing bust line, I really can't live with this pain much longer. Where do I go for help? Start at my PCP and go from there? Just give up and attempt acceptance? There are moments that I break down it hurts so badly.
Sorry for the vent, I apparently really needed one.
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, endometriosis, history of adenomyosis with hysterectomy, ovarian remnant syndrome, IBS, SI dysfunction, arthritis, fibromyalgia, kidney stones, depression, and anxiety with panic attacks.