Hysterectomy for Adenomyosis - I booked it - questions...

Hi everyone,
I have been here a short while, asking lots of questions and trying to uncover what may be the cause of my pelvic, lumbar, hip, groin etc. pain for so many years. The recent MRI I had confirmed I have a moderate case of Adenomyosis, along with pelvic congestion syndrome and prolapsed organs!

I consulted with a gyn/oncologist at Yale who agreed to perform a laproscopic - Robot assisted Hysterectomy to remove the uterus, tubes and cervix on September 25th. There was much discussion about whether we should take the ovaries, as I had breast cancer at 37 (I'm 46 now)... but tested negative for the BRACA 1&2 genes that are rampant in my family. We decided to spare the ovaries unless he sees something suspicious.

The surgeon said it seems my uterus is also retroverted, pushing backwards into my rectum and lower back.

I am nervous and excited at the same time. I cannot take any narcotic pain meds due to a pancreas duct conditon I have - and that scares the daylights out of me. Do you think I will manage ok without narcotics?

Also.. I wondered - since there shows pelvic congestion syndrome on the MRI, is there a chance that my severe pain could be a result of this, and therefore not be helped by the hysterectomy? Has anyone had this experience?

My entire body is in chronic pain daily. I have already undergone spine surgery (now wondering if it was my uterus causing back pain the whole time since spine fusion did not alleviate the pain).

Any insight or advice would be welcomed. Also anything about what to expect or prepare for after the surgery would be good to know. I am going out of state for this surgery, so travel will be necessary. Sure hope I'm doing the right thing. I am hoping the feeling of a painful "weight" in my pelvis disappears and I am a "new woman" afterwards!

Thanks everyone!! R

RLS1231,
I have extensive Adenomyosis and have my surgery scheduled for the 28th of this month. I have much pain and at times much of it is in my back. Just this week, my doctor prescribed Vicodin for when it gets out of control. My GYN says that pain is common for the severity of my Adeno. She also told me that is would get worse over time.

I am also having my surgery out of town (300 miles away). What arrangements did you make for that? I know that my surgeon wants me to remain in that area for 10 days. I will need to stay at a hotel which is going to cost me a fortune. I have thought about just staying for 2 days after I am released and just going home. My husband will be doing the driving. Not sure if going home is a wise idea or not.

Pat

rls1231

Wow, you have some decision to make! Have you spoken with anesthesia/pain folks about how to manage your post op pain? Can you take NSAIDs like motrin? If so there is a medication called Toradal (ketoralac) that is in the same class that is given IV and provides excellent pain relief but is not a narcotic. Find out also if its safe for you to take tramadol. The anesthesia folks (many pain docs/clinics are anesthesthiologists) would know all of the options with your medical history.

I had quite extensive surgery myself (wound up with massive adhesions so started as Lap assisted vag hyst, turned into a abominal hyst plus lost 1 tube/ovary, removal of lots of endo, adhesions).

I did wind up taking some but only took oral narcotics during the day the 1st day post op, and at bed time for 2 nights - not sure what it would have been like with no narcotics at all.

The worst pain is the first few days - and franky if we've gotten to the point of considering a hyster we've been dealing with lots of pain. You'll get through it - but i'd encourage you to consult with the anesthesia/pain folks to make sure its the best situation possible for you and have a written plan ahead of time! Good luck.

Hi Pat, Interesting that you feel the back pain too. Is it right in the area of the sacrum (or along side it)? In any case, my surgeon said it is a one night stay in the hospital, and he didn't require me to stay in town (about 5hours from home) at all. I am wanting to hang around at least a night or 2 though, so we will take a hotel...but I'm wondering why your drs. thoughts on this are so different? 10 days vs no days??? I am having mine done with the DaVinci Robot - so perhaps that is a bit less invasive but not a ton from what I hear - as compared to the straight lap scope.

We will have similar timing so will be great to keep in touch! Was your Adeno found on MRI as well?

RLS1231,
I have extensive Adenomyosis and have my surgery scheduled for the 28th of this month. I have much pain and at times much of it is in my back. Just this week, my doctor prescribed Vicodin for when it gets out of control. My GYN says that pain is common for the severity of my Adeno. She also told me that is would get worse over time.

I am also having my surgery out of town (300 miles away). What arrangements did you make for that? I know that my surgeon wants me to remain in that area for 10 days. I will need to stay at a hotel which is going to cost me a fortune. I have thought about just staying for 2 days after I am released and just going home. My husband will be doing the driving. Not sure if going home is a wise idea or not.

Pat

Hi sppr!
I will be meeting with the Anestesia team at Yale on the 16th. The gyn/oncologist who is the surgeon said most of his patients manage well with Torodol in the IV - and that's what he intends for me. I can tolerate NSAIDs thank goodness. Unfortunately Ultram (Tramadol) effected my pancreas ducts the way narcotics do - so that is not a good option for me.
I guess valium may take an edge off - along with the Toradol/advil type meds.

Wow, you have some decision to make! Have you spoken with anesthesia/pain folks about how to manage your post op pain? Can you take NSAIDs like motrin? If so there is a medication called Toradal (ketoralac) that is in the same class that is given IV and provides excellent pain relief but is not a narcotic. Find out also if its safe for you to take tramadol. The anesthesia folks (many pain docs/clinics are anesthesthiologists) would know all of the options with your medical history.

It does sound like they encountered some surprises with you once they were in there with the lap. This surgeon did say that one advantage of using the Robot was if there is Endo found that was not anticipated - it would be easier to disect than with the straight lap scope. I sure hope there aren't any surprised. Do you know much about pelvic congestion syndrome? Not sure if that will be addressed - but it's glaring at me in the mri report !!

Thanks for all your guidance - I do appreciate!
Robyn

I had quite extensive surgery myself (wound up with massive adhesions so started as Lap assisted vag hyst, turned into a abominal hyst plus lost 1 tube/ovary, removal of lots of endo, adhesions).

I did wind up taking some but only took oral narcotics during the day the 1st day post op, and at bed time for 2 nights - not sure what it would have been like with no narcotics at all.

The worst pain is the first few days - and franky if we've gotten to the point of considering a hyster we've been dealing with lots of pain. You'll get through it - but i'd encourage you to consult with the anesthesia/pain folks to make sure its the best situation possible for you and have a written plan ahead of time! Good luck.
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sppr

Toradol is a great drug - i used it after both my c-section and TAH with great relief. I think you'll do fine - the first few days will be the toughest but franky i can barely remember them now!

Thanks Sprrp,
That is such a relief to hear. I have only had Toradol after a D&C, and once for back pain, but never for major surgery. For my double mastectomies and spine fusion I had been able to use Morphine, and than at home Percocet.
I found the D&C to be no biggie though - so maybe that Toradol is powerful stuff. I don't think they can send you home with pills of it though (not the same as iv) but I guess if I'm in bad shape before my long journey home I could consider stopping in the ER for a quick shot of it. Hoping Advil will work by then though.

I am so glad you are doing better now. I know he said extensive adhesions if found for me would mean more surgery - and also removal of ovaries without hrt after. You must be a real trooper. May you continue to have good health and feel well-being always!! Robyn

I had an LSH for endo and adeno 8 days ago. I was off all pain medication except Advil less than 12 hours after surgery started - so I hope it's similar for you. I also had pelvic congestion and in my case it was related to the adeno - all the blood was feeding the adeno. I felt much better in the recovery room than I had for the last few years.

DH and I stayed in a hotel because we live 2 hours from where we had the surgery done with a specialist. I stayed over 3 nights in order to see the doc again the following Monday before driving home. If you do get a hotel, I recommended a handicapped room - the bathroom and shower bars really helped me!

About the toradol you can get it in pill form.I take it or lortab for my pain.

It's not that bad. I had a TAH just this last Monday (horizontal incision) and I'm feeling better than I was before already. No more constant cramping and rogue bleeding. In fact the only bleeding I've had was a tiny bit of spotting- as opposed to sometimes standing up and soaking an overnight pad all the way through on the really bad days of my cycle.

On preliminary reports (I don't have the full path report yet) my uterus was 3X normal size with adenomyosis, fibroids and scars and adhesions from my c-section 18 years ago. I'm glad it's gone. You won't regret it.