Dilemma, Need some help please

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Monty's Mom
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Date Joined Aug 2010
Total Posts : 664
   Posted 6/24/2012 2:05 AM (GMT -6)   
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.
Mindy
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.

Mealmaker
Regular Member


Date Joined Jan 2012
Total Posts : 78
   Posted 6/24/2012 3:04 AM (GMT -6)   
Mindy,

I am so very sorry you are going through such a difficult and painful time. I cannot imagine how difficult it must be to be having the doors closed on you all the time, particularly your surgeon. I wish I could assist you however all I can do is pray that you find a resolution to your issue asap.

Hugs to you xoxo

Lou
Dx Fibromyalgia, CF, Severe TMJ, Osteopenia of lower spine, arthritis of L hip, bursitis of L shoulder and hip, GERD, Perimenopause and query RA. Deleting Dairy and sugar out of my diet was what set me on the road to recovery.

"Behold the turtle who never makes progress unless he sticks his neck out" Unknown

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 6/24/2012 1:54 PM (GMT -6)   
Have you considered moving somewhere that has doctors who can help you? I'm stuck in a bad situation where I live but am hoping to move soon.
Chronic pain, Depression, Fibromyalgia, Tennis Elbow (both arms), Arthritis (knees and fingers), Diabetes. Ruptured disk L-4, Severe degenerative damage L5-S1, ACDF C5-C6

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/24/2012 2:23 PM (GMT -6)   

 

       Mindy, I'm of course won't be of much help with your female problems, but I'm wondering if you have a Teaching Hospital close by? I also don't understand a GYN who has removed it three times before saying that it is impossible to have grown back, especially if it has twice after the first time.

    Is there a way that you can prove to him that it has indeed grown back?...and then you may not have much of a choice but to have him take a look and remove it again. I did do a little research on the subject, and found many cases to where this has happened to others.

   Good luck, and I hope you can find a solution to this. You sound like your in horrible misery there, and for that I'm terribly sorry for you.

     SE shakehead


Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 6/24/2012 2:40 PM (GMT -6)   
My sweet Mindy, I wish I had answers for you :( All I can do is offer my support. You are doing the right thing by not going back to the surgeon who has done 3 operations on you, because he obviously doesn't know what he's doing. Not being able to leave PA doesn't help, because I'm sure you would be able to find someone that could help in a surrounding state. I've never heard of an adhesion specialist, I guess that's a Gynecologist that specializes in adhesion's? That's a new one to me... Were your surgeries done with a laparoscopy? The page I am reading said the chance of the adhesion's coming back after a laparoscopy are very slim. I will send you the link to the page I am reading in a facebook message as I'm not sure if I'm allowed to post it here.

I wish I knew how to help you & hate that you are stuck in this situation :( I wish I could take all of the pain away from you. Try to do nothing but rest today...Lay on the sofa and watch a movie, or take a nap, or crochet. I hope the pain starts to ease up for you.

You know I'm always here for you honey!

Love and hugs!
Hill
Current: Lumbosacral Spondylolysis, Lumbosacral Neuritis, Arthritis L3-S1, Facet Syndrome, SI Joint Dysfunction, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. On too many medication's to list & have had many surgeries & procedures and I'm only 34.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/24/2012 2:54 PM (GMT -6)   
Hey Mindy...

Girls are crying from their room. Guess nap time isn't going to happen, lol.

Anyway... quick thoughts (thank goodness I can type quick!).... I read this right before bed last night... and went to bed thinking of your situation... and I was praying for you.

I will write more in a little... I don't think you are able to just learn to "accept" this situation and so forth. It's too life altering... and, having a zillion uterine adhesions, too - I think your going to have be get this all figured out

Ok, crying is worse - gotta run. Sorry for the jumbled thoughts... just wanted to let you know I'm thinking of you.

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 6/24/2012 5:41 PM (GMT -6)   
Hi Mindy I'm so sorry that you're in so much pain. I can't even think how much pain you must be in. I wish I could take the pain away also. I do give you my support. You can email me any time that you need to talk or if you see me on Facebook, just give me a hollar. Take it easy and get some rest when you're able.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 6/24/2012 5:59 PM (GMT -6)   
Dear Mindy, so sorry you are suffering so much. I wish I had the answers for you but i don't, i can support you though and am here for you any time you need to talk or vent.
Have you seen all the gynecologists in your town? can you go outside of your town to see a doctor there for these problems?
Keep on crocheting hon, reading, tv, computer for distraction. I know it is not easy hon.
 
Hugs
Suzane

cats
Regular Member


Date Joined Jun 2012
Total Posts : 28
   Posted 6/24/2012 6:18 PM (GMT -6)   
Getting an appt at a teaching hospital with a good gyn would be the only answer I can give you. I know you are young but a complete hysterectomy might be your only answer. I am thinking Mayo Clinic. they probably have seen people like you before and would know what to do. There are other good teaching hospitals maybe closer to where you are. Good luck!
today is yesterdays tomorrow.

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 6/24/2012 7:01 PM (GMT -6)   
Thank you Suzane, Michael, Kaely, Tina, Hillary, Loretta, Lou and Cats, for responding and showing support.

Cats, I had a hysterectomy 3 years ago. The surgeon that discharged me is the best specialist in 75 miles or so that treats endo and gyn using laparoscopy at the teaching hospital nearest us. The next option for teaching hospital is in Philadelphia, but with the state Medicaid, I can't leave Pennsylvania.
 
Hillary, thank you for the website link. It has given us a lot of out of state options, and I have emailed a few with questions.
 
We are hoping to move into a home soon, but moving out of the state is not something my husband or children are interested in. Soon I hope to have private insurance through his employer, and then things may change. I keep praying.

Michael, I am going to call my PCP who is aware of the ovarian remnant syndrome, and get an appointment this week, hopefully Monday, and she usually orders an ultrasound and FSH test stat with same day results. The last one was bleeding and had to be removed. The surgeon left me to look for a specialist that is not even a distinction recognized in the USA. The few who claim to be skilled in adhesions and endo are all far away from us, the one who is close has already looked over my records and will not provide any care. I will prove to my previous surgeon that it is back, and then check at University of Penn in Philadelphia and see what they have to offer.
 
Hillary, Suzane, Loretta, Cats, Kaely, Michael, Tina and Lou, thank you for responding and showing me options other than what I could think through the haze. I have just been resting, keeping track of the two teen sons activities, and allowing my husband to care for things. A few of my girlfriends are going to start a meal making campaign to help my husband have my diet friendly food available instead of burgers or chicken nuggets and fries.
 
Tina, Sadly, with frozen abdomen on my record, there is little hope for me. Everything is so fused together that separating anything would cause organ damage. The specialist that looked at my record said it this way. "when you put two pieces of paper together, smash them down, you still have a good possiblity of separating them in a relatively whole piece. If you wet the paper, or allow it to dry after wet, its nearly impossible to separate them without causing the paper or bread to tear and become unrepairable." 
 
So I just keep praying that the day comes soon when they learn a way to fix me. If it never comes, then I just hope that future generations learn from the women and men who suffer with the same thing I have.
 
Thanks again everyone, this really is a support system.
Mindy
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