Hi Surgery Soon Nervous (children mentioned)

Hi, I found this site tonight. I am 43 and my surgery is scheduled for November 15. My surgery will be a complete hysterectomy with removal of the cervix and one fallopian tube and ovary that I have (I'll explain this in a minute). It will also include a burch sling procedure for my bladder, reconstructive vaginal surgery for a detachment at the rectovaginal septum, a hernia close to the cervix, a nip and tuck here and there and a little tightening of this and that and also a repair for a rectocele.

My history. I have two daughters. One born in 1981 and the second one born in 2002. I have had 7 surgeries to date. Three that were infertility related and occured in 93, 94, 99. It was found that I have a unicornuate uterus and had a right ovary that was noncommunicating with my uterus and located under my appendix. This ovary was removed in 94 due to chronic pain from cysts and also to possibly increase my risk of pregnancy so only my communicating ovary on the left ovulated every month. A right fallopian tube remnant was also removed at this time.
I became pregnant in 2002 after a second invitro fertilization cycle. Both of my babies were delivered vaginally. In 2005 I started having left side pain from the origin of my left ovary. I had surgery in 2005 to remove my gallbladder and repair a hernia and was told I had a small ovarian cyst. This SMALL cyst hurt me for the next year and after my terrible insurance renewed and I could go see another doctor I saw a surgeon about another problem I was having with my colon. I had surgery in 2006 and asked the surgeon to please check on my ovary while he was in there. He noticed a twisted bleeding cyst and removed it. I continued to hurt and couldn't wait for my insurance to renew again so I could go see a doctor. I decided to see the Ob/GYN who had delivered my last baby and who had performed two of the three infertility surgeries on me. (I had moved 200 miles from him since 2004 and so hadn't seen him for this problem in the last few years). I have been seeing this doctor since August and he is now into vaginal reconstruction and rehabilitation. So he diagnoses me basically with a broken pelvic floor and I have been through many tests preparing for the repair surgery. I kept telling him though not to forget that I was still in constant pain and if he fixed my pelvic floor but left me in pain then it would really all be a failure to me. He performed a lap in August to see if he could locate the pain and found a cyst about the size of a plum on my ovary and he removed it. The pain came back after about a week and is now full blown again. He has ruled out interstial cystitis. He has been giving me narcotic pain killers, about 21 every 2-3 weeks. And he was giving me celebrex. When I saw him last week he practically accused me of abusing narcotics. Which I reminded him the last prescription he gave me was three weeks ago and it was for 24. I have to admit I was a little disappointed in him and I reminded him that I am driving 400 miles round trip visit not to get narcotics but because I have faith that if anyone can finally fix whatever is wrong with me it is him. So, we discussed my options- AGAIN. He had already said he didn't want to perform a hysterectomy on me but now he has decided that maybe it would be the solution to the pain I have been in for 2 1/2 years. I have these weird migraine with aura's and my neurologists says no way on birth control pills, but I have tried progesterone only pills and they did not help the cyst or pain. I am tired of being in pain all the time and I honestly feel like this is my only option, but I am nervous. I guess I am the most disturbed about the surgical menopause thing. I am worried about what I will go through without producing my own hormones. I am worried that the elasticity in my skin will disappear and I will look older sooner. I am worried about totally losing my sex drive. I am just worried about what the hormone change will do to me. But, then I think about how it will be to finally be out of pain and I know it is worth it. But, I ask myself what if I am wrong and my pain is not my ovary? Of course, this is pretty low on the list because I have dealt with this exact pain before and I feel pretty confident that I know what it is. The pain is worse around ovulation (yes I am one of those people that can tell you when I ovulated within a few hours sometimes, or at least I could until I started having cysts) and the pain is worse before my period. I had terribly painful periods and lots of bleeding and clots. But, I had the endometrial ablation done recently and that really helped.

I apologize for this mini novel. But I do have a lot on my mind with this. And on top of it my husband who has one child would love to have 3 more. We had so much trouble getting pregnant with the first one that well we ran out of time. I obviously will never be pregnant again but he wants to freeze my ovary for future use with a surrogate. I have looked into this and not only is my ovary too old for that but ovarian freezing and pregnancy rates are not very good. So, I have no problem with the surrogate using her eggs. Anyway, that scenario will probably never play and I am honestly not worried about this just thought I would mention it.

Ok, I am going to bed. But would appreciate some feedback and maybe some help in putting my mind at ease.

Thank you, Trevina

I'm not sure I can relieve any of your fears, except to say I've been there. I had my surgery on Oct 12, but I must say i was very worried before hand. I actually had to stop visiting this site for a while and stayed away from google, because I was in information overload. Although the information was awesome, I was continuing to obsess over my surgery after reading it and was stressing over the "what if's". The hardest part for me I think was having to make the decision for surgery. I think if my doc had told me I absolutely had to have surgery my mind would have been more at ease. I too worry about sex drive and the other things you have mentioned. My fear is that since I chose to have the surgery, then if things got bad, then I would have made the wrong choice. I still have these fears (I'm only 2 1/2 weeks post op) but I have realized now, that I made a decision to have better health. Whatever happens after that is beyond my control. It sounds as if you have educated yourself and made your decision based on your health issues and most of all your future health. I wish you good luck and a speedy recovery...try not to overthink everything (that's what i did!) and also (which is probably the hardest to do ).....try not to worry!

I haven't been told either that I absolutely must have a hysterectomy. In fact my doctor almost acts like he is willing to do it to shut me up. I am very informed about me health and have been through 15 years of doctors and tests and surgeries related to infertility and to other aspects of my health. With insurance that isn't great this may literally be my last hope at getting my life back.

The unknown is very worrisome. I just want someone to tell me you are going to love your decision and that you'll be fine.

My best friend had a hysterectomy a few years ago, but she kept her ovaries. So she doesn't have the hormone issue which is really my biggest fear.

Thanks for your encouragement. I am not one to sit quietly unfortunately and I research everything like crazy. I have tons of books on everything having to do with my health.
When one of my gyn's first mentioned hysterectomy about a year ago the first place I went was to the library.

Trevina

Trevina,

You sound exactly like me. That's my thing. I feel more in control if I know more. I've read books, visited the library, researched the internet - ad nauseum!!

My biggest fears before the surgery were 1) what if they go in to do this and don't find anything wrong and 2) the hormone issues afterwards.

I spoke to my doctor about my fear that they would go in and nothing would be wrong. I told her I knew it sounded crazy. She told me no, that the fear was my body's way of trying to protect itself and that she was positive that wouldn't be the case. She told me I'd been through enough, looked at my history, explained this or that, and I felt so much better when I left. After surgery, as I was coming to, the first thing I remember hearing is my doctor telling me , "Christine, it's all over, you did great, and YOU ARE NOT CRAZY, we found a lot of endometriosis and some stuff we didn't expect either." I had tumors on my ovaries, adenomyosis, multiple fibroids, including one that was quite large.

As for the hormones, now that the surgery is over and I don't have that feeling of impending doom any longer, I feel I'm more able to take that one day at a time. I have a wonderful, understanding doctor who has promised to work with me until we find what's right for me. (Because of the endo, I'm waiting 3-6 months to start HRT) I was so worried that I'd be one of those women who started experiencing surgical menopause the moment I woke up. So far, nothing -- Only been 10 days, but that's more than I expected!! And that's the point, its so easy to expect the worst!! Like I said, now it's one day at a time. I'll deal with the new symptoms when/if they come!

Talk to your doctor about your concerns. Hopefully you have a doctor who will listen and do whatever they can to make you feel more comfortable, if not, you may want to consider a new doctor. If it makes you feel better, get a 2nd opinion (or more). But it sounds to me like you know that you need this surgery, you just want to justify it and provide yourself some guarantees. Unfortunately, the guarantees you want, you probably won't get. But for whatever it's worth, I think you've been through enough. You and your family and your daughters deserve for you to be happy and pain-free.

Take care, and feel free to lean on us anytime you need to. It really will all be ok. I've been exactly where you are, and I do not regret my decision one little ioda!


Christine

Christine, I literally just started crying while reading your post. I am sitting here in pain with my side literally feeling like a white hot poker is stabbing me. And I feel confident about my decision to have this hysterectomy because I have literally been in pain since the first of 2005. Like you though I do have a nagging thought that what if I am wrong. What if it isn't my ovary that everytime it is viewed has a cyst on it? And everytime the pain is worse I have ovulated? What if I am wrong? And those nagging questions also come from the way my doctor has approached this. I was initially seeing a local doctor. He fought with me everytime I went in to see him. He kept telling me that he didn't feel like my pain was from a gynecological source. He would say that a cyst that is only 4 or 5 mm shouldn't hurt that much. Oh he was willing to just do a hysterectomy if that was what I wanted and he is the doctor that initially mentioned hysterectomy as a choice. So, I decided he was not the doctor for me I decided on getting the 2nd opinion from my old favorite doctor that I now drive 200 miles to see.
He immediately wanted to do a lap to investigate so I let him. He found a cyst that was the same size as my uterus and it was filled with blood. He didn't really seem convinced this should cause a lot of pain though. I felt better for about a week and then I was back in pain, not as bad as before the surgery but it is back to that point now. So now the doctor I love and have known for 13 years has made me feel like I just want narcotics from him. And he did this to me Tuesday. And it is not like I am just going to him for pain medicine, we have been doing lots of tests getting me ready for this vaginal reconstructive surgery that is scheduled on November 15. It is almost like he was disappointed that I would keep telling him how much pain I am in when I should be looking so forward to this reconstructive surgery. It was disappointing. So then after discussing a hysterectomy with him on multiple occasions and him telling me that he didn't want to do that, Tuesday he decides that it is a great idea and needs to be done. So I am left feeling like I can't talk to him and that is such a shame because Christine I really like this doctor and he has really done some remarkable things for me. I have my youngest daughter and a lot of her being here can be contributed to him. I will probably end up getting another doctor for my hormone needs, one that I don't have to drive 200 miles to see. I will seek out a female doctor this time. Anyway, I was reading the hormone board where the ladies are without ovaries and was starting to get scared all over again. Weight gain, wrinkles, night sweats, no energy, depression. I am already suffering from some of those things I don't need it to be worse. LOL Anyway so yes I am terrified of the unknown but I am looking forward to being without pain and I want this to be a start at me getting my life back ya know? I just worry that I won't be better afterward. Worry, worry, worry. LOL
Anyway I am better for the moment, thanks so much Christine

Sweetie, I honestly believe that the best thing in situations like this is open communication. Can you ask your doctor why the sudden change of opinion? Can you get a second opinion from someone experienced with these types of issues? (Pelvic Pain, etc) I think it would help you if you could have a heart to heart with your doctor and discuss your fears and apprehensions. Anytime I am confused or worried, I tell my doctor, and she always addresses it until I am satisfied and understand.

With the hormones, don't forget that there are a lot of people that do very well on HRT, unfortunately, we don't always hear from them on these sites, women who are doing well have no reason to seek out a support group......so you don't hear the success stories here, although they DO exist, in abundance.

I had to take a step back from all the research and horror stories where the hormones are concerned. I had to stop reading all the bad stuff.............it just overwhelmed me and worried me more, it wasn't helping me. I know some of the things I can expect, good and bad, and I have an understanding of what my body needs. Other than that, there is nothing more I REALLY need to know........We are all different and cannot predict what will happen for each of us. We really do have to wait and see..........

I really hope that you find the peace with your decision, please don't hesitate to contact me if you want to chat.

Take Care, and Hang In there!

Christine

Trevina
Although my story isn't as complex as yours I can feel your concern and fears and rightly so . I just had a LSH but didn't know what the outcome was until I was in recovery and my Dr told me , she couldnt be sure it wouldnt turn into an abdominal surgery andif I would have my ovaries or not. Talks before surgery with her put me at ease. I'm 54 not in menapause, peri mena pause symptoms had my period every 28 days right up to surgery have minor hot flashes no night sweats keeping the ovaries will help me naturally stay in this cycle but if I needed something to help me I've done enough research to know its up to me and my body to see how it goes I gathered all the info I could like a sponge and really stepped back myself after a bit I just overloaded. I too changed Drs in this journey and was so happy I did. Just wanted you to know your not alone and this site has been a blessing to me Just knowing that there are all these women with stories similar to my ownand knowing this phase of my life can be amazing I'm only post op a week but know this was the best decison. Praying you find comfort and best of luck in your upcoming surgery
Karen

I have my pre-op appointment on the 8th and will get some more answers then. I am making my list of questions right now. Yes you are right about sites like these having many worse case scenarios, I mean people who do not have problems regarding these issues probably do not seek out support groups as you said.

This is just such a life altering issue and I find myself seriously concerned about the unknown. I wish I had a crystal ball and tell whether or not I will someone that is completely happy with my decision or will be someone with more problems that I had to begin with.

Anyway, thanks so much for the support. Trevina

One other thing. Tuesday after my doctor and I had settled on adding a hysterectomy he told me the reason he had told me he did not want to do it before was because he was thinking that I was only in my 20's and he didn't want to do a hysterectomy on someone so young. He said that since I am in pain and have been in pain and have tried bcp's and had two previous surgeries where the ovarian cyst was removed and none of things have helped then he would be willing to do the hysterectomy. I thought about it later and wondered about him because I first saw him in 1994 and have seen him fairly frequently through the years, he did a lap on me in 1994 and one in 1999 and delivered my baby in 2002 and then did another lap in 2007 and surely he couldn't still think I am in my 20's. Although I did accept it as a compliment and told him so. I realize he is a very busy man and probably doesn't recall patients entire histories with him. Although when I saw him in August, I hadn't seen him since December 2002 and he said I looked just like I had 5 years ago which did score him a few points. I guess doctors can also have good days and bad days. Trevina

Thanks so much for your support. I sure hope I am as confident that I make the right decision. You know right now it feels right. When I am laying awake because the pain won't let me sleep, all I can think is how I can't wait to have this malfuncting ovary taken out and to get my life back. But it really isn't that simple is it? Especially with the hormone issue and the possibility of so many different complications. But I really need to get it through my head that I just might be ok. LOL I wish my surgery was tomorrow so that it would just be over and I could start that next step.

Trevina