Wendy
Junior Member
Posts: 74
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Post by Wendy on Jan 7, 2015 19:02:26 GMT -5
I had my first surgery (excision) on April 29, 2013. Since then, my life, if it can be called that, has been a nightmare. Things started to go downhill right away. My surgery was performed late on a Monday afternoon, but because I was in pain, I wasn't released until noon on Wednesday. A week after surgery, with horrible pain and a high fever, I went to the E.R. I was diagnosed with an abscess behind my uterus, and was in the hospital for five days while that was dealt with. The day after I returned home, I began hemorrhaging. I returned to the E.R., this time by ambulance, and received a blood transfusion that day, and another one two days later. The doctors were never able to find a definite reason for the hemorrhaging, but the interventional radiologist who had dealt with the abscess admitted that he had nicked my ovary, so that seems to be the most likely reason.
Since then, I have been in and out of the hospital for pain so many times that I've lost count. I can't work. There have been many times that I've been unable to even eat. I came very close to suicide and have been in a psychiatric hospital three times for depression. Things have been a bit better since the pain management doctor I started seeing increased my dose of pain medication, but pain medication isn't meant to be a permanent thing. I am finally seeing the endo specialist who I wanted to see along, but I have no idea how I'd pay for surgery with him, as he doesn't take insurance.
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Post by willow82 on Jan 17, 2015 18:00:03 GMT -5
I am soooooo sorry that you have had so many complications and still don't have relief from the endo. A few thoughts though:
- You live in a big city and it is likely that there are endo specialists available who DO take your insurance. They tend to be in the oddest places. In Baltimore the endo specialists are in one of the smaller health systems, Mercy. In DC likewise they are in one of the smaller systems, Adventist. I would recommend checking websites of hospital systems in your insurance and see if they have a gynecological surgery department that has surgeons who specialize in endo, then read reviews and more reviews. If you think you've found someone post here, and reddit also has a pretty good endo subreddit where it is appropriate to ask for people's experience with particular doctors.
- If endo or adeno is likely a primary cause of your ongoing symptoms it is worth finding some sort of hormonal intervention that will help, even Lupron. The hell year between my lap and hyst for adeno was made much more bearable by doing Lupron injections. Pelvic floor PT may also be helpful IF you have some sort of medication keeping things at bay. When my Lupron shots wore off PT actually just made things worse. It might be worthwhile to look in the meds with the endo specialist who isn't covered if you can afford it. Medication with endo is so fragile and individualized. Some people do well on combined BC, some on progestin only, and some (like me) only got a benefit with Lurpon with addback. Though whatever solution is best for you it is worth while to do something to slow the damage and create some relief now. Finding a good surgeon can be a really long road, and I am so sorry that you are on it.
- It is also a good idea to get some form of pain management, and help with your symptoms. There were months at a time that I stayed alive by the good graces of zofran, vicodin, and miralax. Any doctor with compassion and some understanding of this illness should be able to provide this. Some dietary advice from the endo specialist or a GI who is aware of endo and how it can cause GI complications is also useful. In my case I have a history of bad colon adhesions and needed to be on a low fiber diet, for others it may be the opposite.
- In regards to trouble eating one thing that really helped me was nutritional shakes they are available as pre made drinks, or as powders in most pharmacies. It is really important your body gets the nutrients it needs in one way or another. I also took a multi-vitamin.
- A therapist who specializes in chronic pain and Mindfulness would likely be the most helpful for the depression. For non endo related problems I had some very severe depression due to chronic pain, being on disability, etc and mindfulness techniques were a lifesaver.
- Some anti-depressant medications can also double as pain relievers for neuropathic pain. I have permanent nerve damage in the right side of my pelvis which causes severe pain and partial numbness in my pelvis, right hip, lower back and right leg all the way down to my toes. However, Cymbalta restores the nerve function in my leg back to normal, as does an old tricyclic anti-depressant Amitriptyline. I now only take Amitriptyline and it does fine on triple duty as an anti-depressant, migraine with aura preventative, and for neuropathic pain caused by endo. So if you are not on a drug like cymbalta or amitriptyline it may be worth switching. Whoever prescribes your anti-depressant will likely be open to doing this.
Hope things get better and feel free to PM if you have questions/need support. Always happy to pay it forward.
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