cramps & endo pain, but only 5 days post-op

Hi. New here. Had my surgery Wednesday, and recovering well, I think. Taking it very easy. Saturday, right on schedule, menstrual cramps and bowel changes started in, so I feel like I am having a bloodless period. Today I started having endo pain in my back again. (I always had 2 different kinds of pain - menstrual cramps during my period, and endo pain the entire rest of the month.) It's only 5 days since my surgery, so I keep telling myself that there's no way to know what the new normal is going to be yet and that this might all work itself out, but I find it difficult to actually accept that. I just feel really scared since I know hysterectomy doesn't always cure endometriosis pain. I've been suffering for so long, and I'm really longing for a normal, pain-free life. I'm scared that if this doesn't solve the pain I'm going to end up back on the pill and/or have a recurrence of depression. (Recurrent depression is a problem, but I've been in remission since January 2012.) I know that it's way too soon to worry so much, but I can't really help it.

I'm going to the doctor for my post-op visit tomorrow, so I'd also appreciate suggestions for questions I should ask.

Sorry to be so complainy, but I'm sure you all understand.

I know how you feel. Remember you are so freshly out and still healing. Your lower back pain could be from the surgery and position you were in during it. My back hurt terribly and started fweling bwtter about 2wks out. I am 5 mo out and I still get crampy when it should be that time od the month. Endo is such a monster and it does so much damage and even though you had a hyst it takes time and healing for all the damage it has done. I ended up having another surgery at my 3mo mark and finally feel better. Good luck sweety and keep smiling.

What did you doctor say today? How are you feeling?

Have you spoken to your Doctor about it?

Hi. So I went to the doctor today. No real news, except that the pathology report indicated there was adenomyosis which he had suspected. Basically we didn't talk much about the pain. He felt it was way too soon to know what it's going to be like. He's very methodical and likes to take things one step at a time, so of the mindset to focus on the surgical recovery which is going very well and then address any remaining issues.

That sounds reasonable. But it's difficult. I guess I'll just keep track of my symptoms for now.

My endo pain always started right after my period and lasted until the next period began. Then menstrual cramps would take over. So on 8/24, right on schedule, menstrual cramps and bowel changes started in, just like a regular period, only a bloodless one. On 8/26 I started having the endo pain in my back again. On 8/27 it got worse. I ended up rubbing my back and hips with stinky sauce (what I call the pain cream I use), and now I'm in bed with my heating pad on my back.

As far as the surgical recovery, that's going fine. But I feel so alone. Most of my friends live far away, and most are not telephone people, so I don't really have anyone to talk to. I can't talk to my mom because my pain stresses her out. In fact, I have to try to hide my pain fro her for that reason. My sister works long hours. I really look forward to seeing my therapist again on the 9th.

I knew the surgery might not work, but I thought it was worth taking a shot. Being it's only been a few days, I don't even know if we can judge success yet. But since the pain seems so right on schedule with my hormones I'm not sure what else this could mean.

My OB/GYN said if the pain persisted after the surgery they could put me back on the birth control pill. It did take care of the pain before, but I gained considerable weight which I have been working very hard to take off. I also bled all month. Maybe it would work better now since the bleeding wouldn't be an issue, but I'm still concerned about the weight issue.

Someone mentioned seeing a physical therapist for pelvic floor dysfunction. I have an appointment with someone on the 16th as I was pursuing that as an alternative to the hysterectomy. If the pain persists I guess I will pursue that as my next option. What questions would you ask?

I feel so sad to be back in my bed with my same heating pad and fan. And I really hate crying alone.

You need to be fully recovered from surgery and cleared by your doctor for pelvic floor physical therapy, but it really helps. It got me through, and to something approximating normal while I was on Lupron.

Did your surgeon actually excise all the endometriosis? Did your surgeon leave any behind? It would be worth call her to find out and request your surgery report, photos, and any video and bring to another doctor if severe pain is ongoing. It can also be reassuring or at the very least enlightening to know what your surgeon did, where the endo was, how it was removed etc.

That is really disappointing, and I know what you mean I went through the same thing after my first laparoscopy. My endo had been excised but my adenomyosis was going crazy.

It also is still really early into recovery, and honestly I had A LOT of back pain a few days after surgery from holding my pelvis funny from right after surgery. Bowels can also take some time to straighten out. Surgery HURTS and causes a lot of trauma to the body and the more endometriosis and adhesions removed the worse it can be.

Unfortunately many of us especially at stage 3 or 4 need to worry about endo and can experience pain even if all endometriosis is excised. I've had multiple specialists explain there is just more of it in my body, and it can even be microscopic. I'm on long term progestin treatment to suppress the endometriosis. It is not a bad idea whether or not there is pain as new implants can form.

Wish you the best, and remember recovery can be rough. I am at 2 weeks now and all things considered my surgery was pretty light (only one endometrioma, supracervical, only 2 areas with adhesions, etc) and I am still on the mend.

Hi Willow. Thanks for your message. I wish you the best in your recovery too.

I ended up calling my other sister after midnight. We're not very close, but sometimes she helps. She did last night. I had a long cry, which I think I very much needed, and let out my fears, and we talked and prayed. She advised me to take some painkillers, which I don't usually do because I don't find them to help the endo pain. Then I went back to bed and watched Frasier.

I'm feeling better this morning, the pain is there in my back, but mild. I think right now I need to keep a log of my symptoms (I found a great pain chart on this site) but try not to think about them, keep my mind on other things.

I think I will reach out to the physical therapist to reschedule my appointment and ask more about her experience with chronic pelvic pain and endometriosis. My next appointment with my surgeon is on 10/1, my birthday. Hopefully 37 will be a better year.

Hi,

Don't give up hope yet of improvement. It's early days your hormones need to settle and your body to heal. I had my op on the 19th Aug and I'm having Endo pain in the groin terribly today and also feel as if I am having my period. Lets hope it is a parting gift? A final farewell. And if not there are still other options we can try.

Also I found painkillers didn't work for my Endo either. I thought nothing worked for Endo. But three weeks ago, I was given something different and these work. I was sincerely surprised. So ask about trying a different painkiller. Keep track of what you try. You can not feel optimistic when in pain.

I hope this is of some help. My first post!

Hi LovesMusic36, as the other sisters have explained, you are still very early post-op. Even if all the endo is gone, you can expect to have these pains. Having a hysterectomy, especially with endo removal can cause a lot of trauma. I can remember that during the first couple weeks after my hysterectomy, I was scared that there was a bunch of endo still in there because I still felt so much pain. I was afraid to even say I was worried it was still endo; I thought I'd jinx my recovery (silly, I know). It turns out it was just the pain of all the excisions. If you think about it, if the doctor excises all the places you had endo, it is going to hurt, and it is going to hurt in the same places. For me, it took a couple months not to feel anything that resembled endo pain anymore. It just lessened over time, and I began to believe that my doc had managed to get it all. Right now, your body has been through so much trauma, there is no way to know what is causing your pain. You can't expect that the pain will be gone so soon after surgery, and a hysterectomy is a major surgery. As your doc suggested, give yourself some time to heal from this surgery before you start worrying that the endo is still there. Hysterectomy pain is no joke, and neither is the tiredness, aches, bowel problems, hormone changes etc. in there. I bet it gets better.