Advice Needed

Apologies in advance for this being a bit long.

I had surgery for my fourth laparoscopy a week ago. 

My specialist found a small amount of endo, removed it and was generally really pleased with what he found. 

I recovered quite fast and was feeling much better by the weekend. However, I then started to get my endo pains again. 

At first I hoped that it was just my body reacting to the surgery, but in all honesty, in the past I haven't had endo pain straight after any of my surgeries. Since then it has got progressively worse, and the other night I woke up with the worst endo pain I've ever had in ten years. I was dry retching it was so painful and my fiance nearly called an ambulance. I should clarify that it is definitely the exact same endo pain I always get, just worse - it doesn't feel like an infection, I don't have a raised temperature and it comes in waves as my endo pain usually does.

I called my surgeon the next morning to see if I could come and see him but he is on leave for another week and a 'fill in' doctor called me back. He told me that "endo pain doesn't come in waves" and told me to take some pills for constipation. 

Now I have no idea what to do. I start back at work next week and I'm hardly sleeping at night because of the endo pains which are some of the worst I've ever had and so I'm thoroughly exhausted and sore.

I don't have a regular GP and worry that if I go to one, they won't understand the endo or the processes my body has been through. I also don't want to go to the ER because I always have bad experiences with them not listening to me and telling me it's probably my appendix or constipation and poke and prod without helping me at all.

Does anyone have any advice for me? Do I wait it out until my specialist gets back? I'm thinking about seeing if I can get an emergency appointment with another gyno, but again they have no idea about my background!

I'm so confused and frustrated that I'm now in more endo pain than I was in before the surgery!

xxx

14 months ago
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  • Jessica

    Have you been referred to a pain management clinic since your diagnosis? It sounds like you have something similar to my conundrum. I have neuropathic pain secondary to endo -  meaning, endometrial lesions have damaged certain nerves and nerve bundles in my abdomen. There are three specific areas that I know are nerve damage and not endometrial lesion pain. My pain treatment doctor tried trigger point injection therapy (very beneficial for nerve damage, but a bit on the expensive side. Luckily, these treatments are usually covered by insurance, in part or all of it) but it didn't work for me.

    My personal advice would be to revert to a simple diet - unbleached rice and breads, chicken broth, a lot of water, and bananas. It'll give your digestive and elimination systems a bit of a break. This will definitely help with the intensity of pain. Plus, a higher intake of potassium helps with endo pain, if that's what it is (instead of neuropathic pain.)
    If you have enough pain medication to make it through until your specialist returns, I'd try the simple diet and pain meds until then. If the pain is too much to wait, then see a gynecologist.

    (p.s. That doctor that said "endo pain doesn't come in waves" is stupid. Don't talk to that person anymore. Even if in his/her experience endo pain doesn't come in waves, that does not mean it is not possible in yours or in anyone else's situation. Mine can come in waves in well, and I've had enough experience to know it. :S)

    If you have any other questions, comments or specifics, please don't hesitate to ask!

    13 months ago

  • Lucy

    Thank-you so much! I don't have a pain management doctor or clinic and I hadn't heard of neuropathic pain so it's something I'm definitely going to look into now. I've been taking it really easy and my pains have eased a lot. I'm still up in the night but it's nowhere near as bad as it was so I'm hoping it might be gradually going away! I'm back at work tomorrow though, so I'll see how I go.

    Thanks again :)

    13 months ago

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