7 weeks post-op and my old pain is still there

I had an LSH for adenomyosis on April 18 and while the surgery pain is gone my old pain is still there. I feel EXACTLY like I did before the surgery- same pain, same lack of energy, same general feeling of crappiness all the time. I don't know what to do. My doctor originally told me that it could take 2-3 months to get better and while I wasn't thrilled with that I accepted it and started making tons of plans to do all the things I haven't been able to do in the past year and a half- everything from going to the movie theater to taking our REAL honeymoon and going on a 7 day cruise to the Western Caribbean (we got married in October and I had been on Lupron for a while and made it through the wedding weekend OK but started getting worse on our honeymoon in St. Augustine).

A while back a friend of mine who is a retired astronaut got us tickets to go see the space schuttle launch from an unbelievable location on Kennedy Space Center property. I have seen a launch before and it was amazing but DH has never seen one and he is a HUGE space geek. We live in Atlanta now so it is within reasonable driving distance but we may move to MA in a couple of years so we won't always have this opportunity. The way it is done now is that you go to KSC, park, board a bus, and then go to this big field where you will see the shuttle launch. The thing is that you have to be there no later than 4PM and traffic around there is the worst I have ever seen so you really need to be there earlier. The launch isn't until 7:30PM so we will be sitting out in the sun for a minimum of 3.5 hours- and you aren't allowed to bring coolers or umbrellas or anything like that. I honestly don't know how I am going to make it but I feel like I have to push myself so that DH can take advantage of this amazing opportunity.

I hate this. Why can't I just be well like everyone else my age? (I am 31.)

Oh, and since my hyst. several friends have gotten pregnant. One told DH about it days after my surgery- and he wisely kept it to himself for about a week. I had a little breakdown when he told me, too, so it was a good thing he held off. Another friend is having a baby shower this weekend, at least I will be out of town for that so I have a legitimate excuse for not going.

Poor Newsjunkie!

My heart goes out to you. You sound so frustrated. A trip to KSC to see the shuttle launch sounds very exciting when you're not uncomfortable, but the conditions you're experiencing make it far less than appealing. You're such a trooper to want to do this for your DH. You want to be like other women your age, but your selflessness makes you sound very special and giving and that sets you apart from others in a wonderful way. There are plenty of women who don't have that big a heart that they would sacrifice their comfort for someone else and a once in a lifetime experience. You're special. Don't forget that! You'll get past this miserable time.

As for dealing with babies, showers, and celebrating with friends - you deserve a time to grieve. If you don't feel like you can attend those things, you don't have to. You'll be able to do it in time. There's no need to rush it, or ignore it. Be good to yourself, and celebrate the wonderful woman you are.

Hugs!!!
Tracy

I am so sorry sweetie. Give your body time to heal, I know how frustrating it can be but you are a survivor and you will pull through with your head held high and a smile on your face!!
As for the babies and showers and all I am right there with you. My little sister found out she was pregnant with her first child the day of my hyster and actually told my mom right outside my hospital room!! I have tried so hard to be happy for her and not be sad but it has been a huge effort. I think that Tracy said it right when she said that we deserve time to grieve before we can be expected to do these things without a bit of sadness.
Take care sweetie..

Hugs to you!!
Echo

Newsjunkie ... I had my TAH the day after you. I, too, still get quite a bit if pain/cramping which I thought I wouldn't have after my surgery. I still have my ovaries, so not sure if they are tossing out hormones/signals and causing trouble, or what. I know when I am ovulating and I know when I "should" be on my period as I get the same cramping. Anyway, I just take my ibuprofen (every 4 hours) during those times and it seems to be pretty good. I go in for my eight week checkup next week and will be asking about these cramps and pains. Good luck to you ... make sure you take a large brimmed hat with you to the launch to at least keep the sun off you. Try and have fun ... your hubbie is a lucky man!

I am so sorry you are still experiencing the 'pre' hyst pain post op. I had my TLH for endo, adeno, and fibroids 4/30 and am happy to report that so far, I am pain free.
What concerns me is that in your case, with keeping your cervix, there is a possibility that some adeno and/or endo could have remained in the cervix???? This was one of the main reasons I wanted mine gone.

Have you asked your doctor about this?
I hope you feel better soon!

Thank you everyone for your support. I guess I got caught up in whining about how I am going to get through this weekend and didn't focus enough on how bad I am feeling. Does this sound normal to any of you? I mean, I am 7 weeks out and feel exactly the same as before. The surgical pain is definitely gone as that felt completely different from my regular pain so it isn't just delayed recovery or anything. At my second post-op visit (first was at 1.5 weeks, second was at 5 weeks) he did an exam and it hurt when he pressed down on my lower pelvis which he said meant it was bladder pain. (It hurt EVERYWHERE he pressed like it always has but it hurt more over the bladder.) He prescribed hydroxizine, an antihistamine (!), for it and that seems to have helped THAT pain but not the regular pain. Ibuprofen and Tylenol do nothing and I am still taking 4mg of Dilaudid 3 times a day (which is as prescribed- exactly what I was taking pre-op). Before deciding to get a hyst. I was thoroughly checked out by a urologist and do not have IC or any other bladder issue that would cause pain. I have an overactive bladder and I go to the bathroom a lot but that is it.

Sorry, don't mean to give you all my medical history, I am just so perplexed as to why I am not feeling better. How long after your surgeries did you realize you only had surgical pain and not your regular pain? Seems to me I should have felt SOMETHING by now.

Whine away, Sista! No need for apologies. That's why we're here. Because you still have your ovaries, they could be responsible for some of your feelings. Poking them around disturbs their normal function. They're working hard to get back on their regular schedule, and this might be contributing to the lousy feelings. Seven weeks after a major surgery isn't that long a time in the internal healing process. While you're going through it, it feels like a lifetime, but it's really not. You're on a heavy duty pain medication too. Strong narcotics have their own list of side effects. It's an awful lot to be on every day if you're supposed to be on the up side of recovery. Maybe a second opinion is in order to see if there isn't another cause for your misery.

I feel for you. Fighting for the proper care to make things right isn't always easy, and in this day and age we have to be well informed and in total charge of making sure that we get what we need. Our bodies are like science experiments. Everyone is different, and sometimes it takes trying lots of different things to get what works for us individually. You sound like a strong woman. I'm sure you'll get to the bottom of this. In the meantime we're here and happy to listen and lend a shoulder or a hug. This, too, shall pass.


Tracy

When I went fo rmy hysterectomy, I was supposed to have a TAH/BSO because of fibroids causing severe bleeding. Well, once inside, the surgeons told me they found a ton of endometriosis that wasn't planned for. Nobody knew. They were able to take everything out except my cervix, andI do wonder sometimes if the endo will come back because of that. I know that they cauterized it, I think, but I would think if the cervix is still there, then the endo could come back. After going through that surgery I feel like I got cheated out of something. I know it wasn't the drs. fault. So it's back to yearly paps again. I don't need another one until 08, which is good. Last one before the surgery was normal. I also had an HPV test and that was normal too. I guess I should be grateful for that.

Hi Newsjunkie76,

I also had a LSH. I had healing twinges as I called them around my cervix area for the first 6 weeks post-op. It created some discomfort some days.

I say...do not feel you need to rush post-op recovery. We Hyster Sisters all heal at different speeds and you are having your own unique recovery. Yes...a LSH is a less invasive hyst and it is still MAJOR surgery. If you look at it...you are less than 2 months out from surgery. In the scheme of things, that is not a long time. So...go easy on yourself and just realize you will be fully recovered when your body is ready. It may be frustrating until then and just know...we Hyster Sisters are here to help if we can.

Sending best wishes~

Mary

Mary

I'm not having twinges of anything, I am having the full on regular 6, 7, 8, or 9 out of 10 pain I had before the surgery. It is like I didn't even GET the surgery. I guess what I am thinking and what I am afraid of is that maybe I didn't have adenomyosis and that is why I am not better. I had 4 GYN opinions, same symptoms as adeno, ruled out EVERYTHNG else it could possibly be both in GYN and in GI, urology, even hematology, and I even reacted to Lupron and when they put in the Mirena IUD the cramping I had which we knew to be coming from the uterus was exactly like the pain I experienced with my regular pain. It HAS to be adeno but for some reason I am just not getting better.