made surgery date but now I am feeling better?

Hello everyone,

Here are my two main questions:

How do you deal with anxiety of is this the right decision when your symptoms are not life threatening and vary in severity?

Is it appropriate to have a hyst for PAST issues and to prevent future ones without currently experiencing any symptoms?

Read below for details:

I just made out a check to reserve my surgery date of Jan 21st or 19th. I will be having an LAVH and keep my one remaining ovary. I will stay on hormones to over ride my ovary because I have a history of rupturing ovarian cysts without hormone replacement. I will most likely not keep my cervix and my doctor is a highly skilled endometriosis specialist who I have a good long standing relationship with.

I have:
endo (although it has been excised twice and may not have any at this time)
enlarged uterus
3 fibroids 4-5cm (at least one of which is degenerating)
multiple other fibroids
a retroverted uterus (this only happened within the last year was not born with it)
possible adeno
severe adhesions
and I have had 13 pelvic surgeries related to endo and the fallout of a burned ureter during an oopherectomy. (which is why I know so much about what is in there)
My bladder is fused to my psoas muscle and I have only half of my right ureter.

Symptoms:
Pain
constipation
fullness/bloating
I am on continuos BC pills and do not have periods, blood or pain associated with periods. I have struggled a lot with pain throughout my ordeals though. I am in one of the best pain free periods I have been in in a long time now. This comes on the heals of a pretty bad round which was probably the fibroid degenerating. I have times when constipation is a very bad issue for me as the fibroids are posterior and my uterus is tipped backwards. But right now everything is running so smoothly! I have low back pain that is new within the last year and nerve pain in my back and buttocks and leg that is new since last year. I see a pelvic floor physical therapist and have worked very hard on my pelvic floor rehab.

My dilemna:
I went to see the GYN when I was having pain that was probably associated with the degenerating fibroid. (diagnosed via MRI) Now, I guess the fibroid is no longer degenerating. I made the hyster date and I am feeling so much better than I have in ages. I have pain and issues, but nothing compared to what I went through when I had complications after my ooph and spent 3 years in and out of hospitals and getting surgeries and nerve damage. I have made significant progress.
But now my uterus tipped backwards, and sometimes I have a real problem pooping, which is one of my already bad things due to adhesions. but this symptom comes and goes.
Same with my pain level.

How do you deal with anxiety of is this is the right decision when your symptoms are not life threatening and vary so frequently?

Is it appropriate to have a hyst for PAST issues and to prevent future ones without currently experiencing any symptoms?

One reason I feel pressed to have the hyst now (in Jan) is that we are finally getting licensed to be foster parents (something I have worked towards for 3 years now) and I will not be able to have the surgery and the healing I need AFTER the kids come. I need to have the surgery first and be healed for when they arrive.

Thank you for any support you can offer me.

Hi. I went to see my gyn in Sept because the summer was torture for me with pain and periods every other week. After I went to see him and he recommended hysterectomy, my symptoms have lightened up. The pain is not as bad and I am not bleeding as frequently. I have been wrestling with the same question, should I have it done now because I know eventually I will have symptoms again. I was diagnosed with endo last fall and possible adeno about 3 yrs ago. While still nervous about it, I have decided to go through with the surgery because of the past symptoms and knowing that based on my family history I will need one later for fibroids. As other sisters have said to me, only you can make the right decision for yourself but I would suggest thinking about the "flares" and how they feel. This site is great for support.

I think that everyone has to make the decision for themselves. I would get all the information you need and maybe get a second opinion if you think you need it and then decide what is best for you. Prior to my surgery,I had been in severe pain for months and nothing was helping. About a week before I suddenly started feeling better. 'I wondered if I was doing the right thing but knew I needed it because the medicine was not working and for me it would be a matter of time before the endometriosis kicked back in. The night before the surgery, I was in agony. I guess someone decided to let me know I made the right decision. I am now eight weeks post surgery and know I made the right decision. I am not having the horrible pain that I had before. Like I said, everyone is different but for me I did make the right decision. Hopefully this will help some.

Like the other sisters said you may want a second opinion to help you decide. However, for me I decided that now was good since I have several health problems and, in fact, had to get clearance from my pulmonologist before surgery would even be considered. It seemed that if I waited any longer and my health got worse I might not be able to get the surgery unless it was life-threatening. As it is, my PCP told me that only because this was "medically necessary" was the surgery going to be approved. I later found out that the hospital required him to do a physical and approve that I was eligible. This, of course, after the pulmonologist gave his blessing.

I'm so glad that I had it done. Even my DH said that I look and am moving better than before the surgery and it hasn't even been a full week post-op!! My DS commented tonight that at the rate I was going they were going to have a hard time keeping up with me after I finished healing. I had a dVH/TLH-BSO with cystocele repair with the repair done by a urologist. Both doctors were FANTASTIC!! I had gone through several doctors getting opinions before I settled on this ob/gyn and he recommended the urologist. It was great as they have worked together several times before. I have so much more energy and the pain that I had before is GONE!!

So, the questions are:
1) Is this surgery "medically necessary?" Will it get rid of the pain or problems that you are having?
2) If you put this off until later, will it make your situation more complicated?
3) Is this the doctor or team that I want for my surgery?
BEST WISHES AND HUGE :hugs5: while you make your decision.

Linda

I had my original date Aug. 25 but I felt better and canceled my surgery. Over the summer the pain kept coming back stronger and stronger, I knew I needed to get it. So Oct. 1 was my date. My pain always acted up when I was camping w/my family, it got so bad we would have to come home early. Good luck. This is not a light decision. If you are not ready, then maybe ask for a later surgery date.

Have you talked to your dr about any alternatives to a hysterectomy there may be something else that can be done that will give you some relief. I had some of the problems that you are having and after years of pain gave in and had the hysterectomy, but you should be very sure because it can not be undone once it is done. I am two weeks out of surgery and already am in less pain than before and very glad that I had it done.

HI,

I am in a very similar position as you and was also thinking along the same lines as you. But if I sit and think about about it, this has been a long slow journey, 14+ years. I have worked through many treatments. The past 2 year the BC pills have been a godsend. No periods, no cramps, no clotting, no anaemia. My largest fibroid did the degenerating thing in May. Excruciating for a while and by September I was feeling great. But actually it was relative as the pressure symptoms are still there. Bladder, bowel, dragging weight and sore lower back. As I was feeling ok and on the up (new job, finally together with my partner after many years long distance) I did not wear my control pants (Lady Gaga's: she had some on at Glastonbury!) for a couple of days and now feel awful. This morning after a weekend of foul temper my period has returned. Big shock never been premenstrual before and not enjoying the cramps. So last week I would have said no, this week it is please hurry up. This is too hard.

Not sure if this will help you, but it's my story so far. All I know is that I'm nearly 46 and I have less energy than my mum 71 or my aunt 80. I want to be able to be a better more energetic and less snappy mum.

For those who are not sure whether to proceed or not. I was scheduled back in January and I literally was afraid so I canceled. I was not in a life/death situation. So, we decided to the wait and see approach. Well, as the months went back the bleeding started linger longer and more clots and then pain that I hadn't experience before. Then in May I was in NYC and omg I thought I was going to bleed to death. My feet swelled and I have blood building under my skin around my ankles. That happened again in July and then in Sept. Both of my dr.s said that it was poor circulation at that time. They told me that it was poor circulation in that area anyway. but when you have a lot of blood and it builds up and doesn't circulate properly it builds there. Ok. what does that mean it means it is not flowing back to my heart like it should. That was enough for me. So, even though it seems to be getting better so you think it can take a turn and end up worst than before. The decision is yours. I'm glad I had it done, I am recovering nicely with no real issues except gas and that is manageable.

Good luck ladies my prayers are with you all.

Thank you all for your thoughtful replies. It is great to have somewhere to come for comfort while I try to figure this all out.

I continue to struggle with the decision. I have had 3 opinions so far. (and each year I go thru this I get more and more opinions)

I could have other procedures, but none take care of the severe retroverted uterus (unless I want to do the ligament thing, which I dont) nor the possible adeno. No doc has ever said that I must have a hyst or even that I SHOULD, just that if I wanted to, it would make medical sense. The only thing that would take care of ALL of my issues is a hyst. I could have more conservative treatment to treat parts of the problem, but none to treat it all except hyst.

I have had many conservative treatments (myo, right side ooph, endo excision) before but find myself right back at this question about once a year.

Having had some of the worst complications (ureter damage) from just an ooph, I am terrified of more complications or of making my situation worse.

I know that pain has many sources and after years of pelvic floor therapy I know that most of the pain that women associate with fibroids or endo actually is pelvic floor muscle spasming and connective tissue disfunction. So it is hard for me to say that my pain/issues are actually from the uterus.

I am so hot and cold on this. I think by the time Jan comes I might just go crazy!

trails,
I know it is so hard to make this decision. I guess the best thing I can suggest is to get the opinions and especially to find out what the positive effects would be to have the surgery vs. the positive from not having it. I know for me it came down to living in excruciating agony and praying for the shot to try to stop it and using pain medicine. My doctor looked at my previous exploratory lap and said that the Lupron wasn't working and that I would continue to have pain because I was considered a failure with medicines. Everyone has to struggle with this and decide what is right for you. Good luck and just know that we have probably all struggled with this. We are all here for you.