Susan's Place Transgender Resources

I had my orchi in early November by a well respected by the transgender community doctor in Atlanta. During the surgery, done via local which wasn't too painful, but at one point on the left side felt like a jolt of electricity shot up the cord into my abdomen..The first week wasn't really bad, I was only on strong pain meds for a couple of days. I was back at work (a short/light week, I have a desk job) after a week, was still was in some pain and fairly swollen but not too bad. Two weeks out something on the left side didn't seem right and was much more tender than the right but I assumed it was just still healing. Went back to the doc after a month complaining about pain on the left side and could feel a blob of something that wasn't on the right side. -One time- she mentioned "Well one cord is a little longer than the other, that is what you are feeling, nothing to worry about", she would never again admit this. At this one month point she said I was "at the half way point to healing and it would only get better from here". It hasn't.

6 weeks out I took a trip and did a good bit of walking around, -maybe- a total of 4-5 miles over a two day period. Left cord got so lit up I contemplated going to the ER in the middle of the night, lots of swelling and pain was really worse than the day after the surgery. Like I was crying rolling around in bed pain. Ice and lots of advil/bed rest the next day got the pain manageable. When I got home, I went back to the doc. She said I was "overdoing it" and I needed rest (the previous visit she said I could "resume activity"). I took two weeks off from work and laid on the couch. It wasn't any better, I could still feel this tender lump next to my penis on the left side and went back to the doc again.

She then thought maybe it was a low grade infection, gave me a zpac and some prescription aleive. Told me to rest, come back in two weeks and if it wasn't any better she had a plan on what we might need to do. I had closely been monitoring my body temp since the surgery and it had never gone up, so I didn't suspect this was an infection, especially 8 weeks post op. But I followed her instructions, continued to rest, took the antibiotics and the meds for inflammation. It didn't improve. I expected her to tell me it would need some minor revision surgery and I was fine with that, I would even pay for it if that is what was needed.

I went back to the doc and when I told her it still wasn't better, she became hostile. She said this pain was in my head, the surgery was 100% healed, was done 100% right and accused me of trying to use this for pain meds. I was shocked, for one thing I only took prescription pain meds for 2 days, never asked her for a refill and in fact still have 90% of the original bottle of pain meds on my shelf. One time she asked if I needed a refill and I told her no, that I don't like how they make me feel. When I pointed all this out, then she said "Well sometimes when people have a body part removed they have a strong emotional attachment to, they develop this type of 'phantom pain'". Yeah right I elected to have my nuts removed because they are my best buds..

I tried to explain that physical exercise or even simply crossing my legs will make it hurt, I can physically feel something "hanging down" on that side that isn't on the other side so how can this all be in my head?" She got increasingly ugly and told me that as a surgeon, there is nothing else she can do, that I need to see a mental therapist/pain management clinic. I left really pissed off.

Since then I have called 2 urologists in the area and as soon as they hear someone else did surgery they "don't want to get involved, and I should go back to the surgeon". Like seriously? I'm in pain and they refuse to even look at me???

At this point I am coming up on being 6 months post op and this left side cord is still a problem. If I do nothing except lay around for a few days it calms down, but if I walk around, even just around the block on level ground, it get's all lit up and the whole area around the cord becomes obviously swollen. The cord stub on the left side is easily 1 inch and maybe 1.5 inches longer than the right side. If I really probe around I can feel the end of the right cord up inside me. The end of the left cord is about even with the center of where my penis attaches to my body. I think what is happening is when I walk around, the end of the left cord is rubbing on stuff and is getting irritated/inflamed. I don't suspect this is ever going to heal.

So I guess I have a few questions, first does this sound in any way "normal" for this procedure? Second, where do I go from here? It seems other doctors don't want to get involved or even examine me, the bitch doctor won't admit she possibly botched this and I'm starting to get depressed that I'm simply going to be in pain and unable to resume being an active person for the rest of my life. I really thought this was going to be a good thing, less meds, lower T levels etc and all that has been positive. But this constant pain really sucks bad..

Big hug! Sorry, Stephe, I hope you can get this sorted out.

Hugs, Devlyn

Lawyer up. 

Stephe, I'm sorry you are going through this.

Quote from: Stephe on March 08, 2015, 05:12:01 PM
... So I guess I have a few questions, first does this sound in any way "normal" for this procedure? Second, where do I go from here? ...

No, this does not sound normal. I (sample size of one) did not have any pain, and haven't read of others with pain either.

FWIW, I did find this link (http://www.justanswer.com/urology/6kscy-recently-left-radical-orchiectomy-testicular.html) where an orchi patient is reporting a similar pain. The doctors response suggests that the spermatic cord should have been removed up to the inguinal ring, so an edema or a hematoma is the likely cause in that case.

On the other hand, this article (https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=6&cad=rja&uact=8&ved=0CEEQFjAF&url=http%3A%2F%2Fwww.practiceupdate.com%2Fcontent%2Fevaluation-and-management-of-chronic-scrotal-and-testicular-pain%2F17607&ei=v8v8VIe8L4bRgwTxjISwBw&usg=AFQjCNGfltbtWMsgJ0HW_swcrmtHEpj-Lg&sig2=CBZJBjec9XTwYRvL0HIRZA) states that "patients can develop phantom pain after orchiectomy", another possible cause.

I hope you find a solution soon sweetie...

Quote from: Eveline on March 08, 2015, 05:34:58 PM

states that "patients can develop phantom pain after orchiectomy", another possible cause.

I wouldn't think that phantom pain is a cause and effect type of thing. Like every time the doc would examine me, it would be sore/hurt for a couple of days after. If I "self examine" trying to feel the cord, it hurts for a day or so after. Same with exercise etc. I would think phantom pain wouldn't respond to like being touched or doing something that would irritate it nor would it cause physical swelling but would just be like pain for no reason. The fact I can physically feel something inside on the one side that hurts that isn't on the other side, makes me believe she just didn't cut the cord short enough on that one side.

I guess my main problem is, how can I now get another doctor to look at this or treat me? They all either seem like they don't want to get involved for legal reasons or because I am trans...

You know, it seems like an SRS surgeon would have no problem helping you. After all, they do much more extensive work down there.

Are you near any of the well-known ones?

Quote from: Eveline on March 08, 2015, 09:02:51 PM
You know, it seems like an SRS surgeon would have no problem helping you. After all, they do much more extensive work down there.

Are you near any of the well-known ones?

I don't know if there are any near Atlanta GA? I may end up having to fly to go see someone if I can't find anyone locally...

Quote from: Jill F on March 08, 2015, 05:17:24 PM
Lawyer up.

+1

Also, file a complaint with the state medical review board. Never mind the potential botched surgery, her attitude about blowing you off for a month or more, then accusing you of trying to get pain meds is totally unprofessional.

If you can, go to the ER and see if there is any infection, or some anomaly, only a professional medical person, can really tell you if something is wrong up there. I'm pretty sure that ER physicians have seen all types of worst case scenarios, they would not really be surprised, I know in L.A., they wouldn't.  Second, once you have your pain under pain management and can feel more recuperated and on your way to wellness, then hunt around for a medical malpractice atty, then take it from there. If they medical malpractice atty does not work out, at least file a complaint with the medical review board of Georgia.

Sorry for your pain and suffering :(, I do hope you feel better and please keep us posted on your situation.

I'm really sorry to hear this is happening to you. I hate it when doctors refuse to take responsibility for their mistakes and outright incompetence and resort to blaming the patient instead. I can't help you with your questions but I hope you do get it resolved ASAP even if it does require a second doctor to deal with it.

Pain is definitely not normal. Everyone I know says it felt fine after a short period.

Might not be what you want to hear, but the doctor who did your original surgery is not treating you well. She is wrong to tell you the pain is in your head. Document all your interactions with her. You may need them if this enters the legal realm.

The reason I say that, is that you will need to find a surgeon somewhere who is willing to take your case and fix whatever the original surgeon got wrong. You will have travel expenses, you will have medical expenses, and you may miss time at work. Your surgeon will need to make good on those costs, either voluntarily or in court. I would contact a malpractice lawyer to look into what your legal rights are. Malpractice laws are abused, but this is EXACTLY what they are meant for.

As for continued medical care, I would go about trying to find a surgeon. Somewhere on these boards is someone who was happy with her urologist.

Also might help to contact your local medical professional association. Tell them what happened and ask them if they can connect you with a specialist who would be willing to take your case. Often teaching hospitals are those who take the more difficult cases, and your case has entered in the realm of difficult.

Document all your expenses. The doctor who is making your life hard will need to compensate you.

Quote from: Stephe on March 08, 2015, 09:37:46 PM
I don't know if there are any near Atlanta GA? I may end up having to fly to go see someone if I can't find anyone locally...

Stephe, the only two SRS surgeons I know of on the East Coast are Dr. McGinn near Philadephia and Dr. Reed down here in Miami.

Thanks for the advice so far. As far as lawyers, while I might consider doing something later (but probably not for more than the actual expenses), for now I just want to get this resolved. The good thing is I have the money to pay for more surgery, travel etc. that isn't an issue.

My problem is, it appears other doctors assume I am looking for someone to say "yeah, she did X wrong and it needs more surgery" just for the purpose of developing a legal case and they will then get drug into a lawsuit. I can't think of any other reason another doctor would say "I don't want to get involved" when someone is in pain and reaching out to them. Unless they have a problem treating transgender patients?

It appears I have found another reason being transgendered sucks, I can't find anyone who wants to treat me. I can't imagine if I was a man who had this done because of cancer and was having issues, they would turn him away that easily...

If docs refuse to treat you because you are transgender, that's another reason to keep an attorney handy. 

I have to admit I had no pain after my Orchie, I even upset the nurses by refusing pain meds, Mine was done under general anesthetic however so maybe they drugged me up so much I couldn't feel it but as I was terrorising the nurses all day while recovering i don't think I can claim to have been out of it on drugs

If you have an infection there will be some obvious signs like redness or swelling. Maybe the solution is to have something legally drawn up by your attorney exonerating any doctor who helps you from being involved in legal proceedings. I'm sure your main focus is fixing whatever it is that's causing this not what you can do to your surgeon because of it so this way you get answers and an end to pain. Any good urologist will be able to help you as they do things down there all the time.

Hope the pain goes soon

Hugs

Sorcha  ;D

Stephe,  I think I know which doctor you are referring to. I also live in the Atlanta area.  If you have not done so already, please call FEMINIST WOMEN'S HEALTH CENTER.  They are easy to reach and can probably refer you to a good doctor here in the area.  They have a Transgender assistance department and can be a great resource. The center also has medical assistance should you need it for physicals, prescriptions, etc. There is a GRS surgeon in Atlanta but I cannot recommend them because I know nothing of it.

Feel free to pm me.  Hugs,

Kitten

As a native of the metro-Atlanta area, her conduct strikes me as unfortunately normal. Now, you have to understand, the accusation of "using her for pain meds" isn't unfounded - in my little hometown of Lithia Springs, and in Douglasville where all my friends lived, pill-popping was (and probably still is) a very real problem. I went to high school with pain pill addicts.

However - that doesn't excuse or vindicate her in any way, shape, or form. Again, this conduct strikes me as very normal for the area...and it's a damned shame. As Jill said...lawyer up.

When you move, can you feel any tight tissue.  Some scars heal to other tissue that they shouldnt.  I had that issue. 
Probe around on each side and see if anything is pulling?

I think you are right in trying to find a second opinion before you lawyer up. That could backfire seriously. Perhaps you could get an appointment with an endocrinologist, get in there, and then explain the pain? And then plant the info of the surgery on him? I honestly don't know what to tell you but I sincerely hope you get it resolved soon. And the comment above about the transgender services, take it seriously.

Chin up
Cindi

Well I found a surgeon who would look at me, he wouldn't commit to "she did something wrong" but didn't say this was in my head or "phantom pain" etc. either. He does want me to give it six more months to see if this will go away on it's own. He did say "surgery is always an option" but didn't seem too interested in doing any revision work right now.

Some days it doesn't bother me much at all. Then, if I am a little too active (walk more than 1/2 a mile) it turns bad again. Last night I woke up at 4:00am with 8/10 pain scale after I had gone for ~ a 1 mile walk the day before yesterday. I was a little sore yesterday but nothing even close to the pain I was in last night. Before I took this walk, I had felt pretty good for a couple of weeks. The problem is, I feel no pain etc while I am walking, it hits me hours or even a day later. I'm putting on weight due to lack of exercise plus just generally feeling unhealthy.

This other surgeon seemed understanding and I appreciate someone not wanting to jump to doing more surgery but this just seems wrong and all of the problem is on the left side, where she left the cord much longer than the other. I just can't imagine being forced into a sedentary lifestyle due to this. I suppose I could go back sooner and try to insist we try something besides pain management, I'm not interested in being on pain meds the rest of my life (or at all, I haven't taken anything other than advil since a few days post op even though docs have offered..) and as I said, some of the time it doesn't hurt at all. This is just so frustrating and depressing.... Something I expected to improve my quality of life has turned into a nightmare.

Geez, Stephe, I wish I could do more than just read your post. Sending lots of hope and positive thoughts your way!

Hugs, Devlyn

Well finally have some good news. The first visit with the second urologist didn't bear much fruit, he wanted me to wait 6 months and also felt it was some sort of nerve damage or possibly was just slow healing. He talked about possibly having pain meds injected into the area. I didn't like the sound of that at all. About 2 weeks later I had another 8/10 pain scale episode after about a 1 mile walk and went back to see him. He decided it was time to do a CT scan just to eliminate other possible issues. he said he expected it to show nothing but just wanted to eliminate any other possible problems.

Well he called back and reported they found a small hernia in my groin in the surgery area and this likely is the whole problem. This all makes sense now and hopefully the general surgeon he is referring me too will be able to repair this!! I'm just glad to finally have someone believe me, "There is something wrong", instead of that phantom pain BS answers I was getting.

I'm not even sure now what they said was "the cord" on the left side even was the end of the cord? It could easily have been something else poking through the hernia opening.... Time will tell but I finally feel like this can be resolved and I can get on with my life!!