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Desperate Please can anyone help? Desperate Please can anyone help?

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  #1  
Unread 12-25-2003, 11:24 AM
Desperate Please can anyone help?

I am 5 weeks post Supracervical abdominal hysterectomy and although the procedure went well I am a mess. I had asymptomatic fibroids and my doctor convinced me that I had to have them removed. My husband was also really worried because the doc was talking about leiomyosarcoma (cancer) and that without patholgy to tell the difference the leiomyomas (fibroids) might be cancer. The fibroids (2) were small (3cm) and new since my last pap so they had taken over a year and a half to get to that size. I tried to talk to him about waiting to see what they would do since I am 52 and menopausal and fibroids frequently calcify and stop growing after menopause. I am just now feeling like I could live after serious post op pain. I have adverse reactions to everything in the pain med category so after two days in the hospital with a minimal amount of Demerol I had nothing for pain except Ibuprofen.
My problem is that I have now realized that I was so pushed into the surgery that I spent all my time trying to make up my mind about surgical decisions and not about whether I should even have the surgery at all. Even though I expressed doubts on numerous occasions I was always met with the horror stories of women dying of cancer because they did not do the surgery.
I am DEPRESSED beyond reason, I feel victimized, butchered, alone, afraid, anxious, panicked. I cry all the time or am on the verge of crying. I have been on hormones for years and am taking plenty now with no "menopausal" Symptoms. I don't know what to do and I feel stupid, embarrassed and humiliated all the time because what is the point in being so messed up now? The sugery is over and done and I can not undo it. I can't relax, I can't calm down. <admin. snipped for legal reference>
I am sorry to ramble and even sorrier to bring this up on Christmas Day. Does anyone have any advice? I am not going back to this doctor. I had a nagging pain in my right side before surgery and assumed it was related to a fibroid. I still have the same nagging pain only it seems to be getting worse and I am terrified that someone will find something else that they want to "operate" on and I don't know what to do about that either. Want a real laugh I am a BSN RN! How could I have been so stupid?
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  #2  
Unread 12-25-2003, 11:54 AM
Desperate Please can anyone help?

Hello Jasmine1,
I am so sorry that you are having trouble post op. Though I do not have any specific answers to your questions I wanted to let you know that I am out here and that I care about you!
I am learning to not appologize for my feelings especially since I have gone through 5 operations in the past 4 years! It is very difficult to be strong all of the time and to keep getting our needs met as we journey through life. I know that you will get some answers to your questions soon. This site is so wonderful! I just wanted to send you <<<<<HUGS>>>>>!
Know that I am thinking about you today and I am wishing you a Merry Christmas!
  #3  
Unread 12-25-2003, 11:57 AM
Desperate Please can anyone help?

Jasmine...I am so sorry you are going through this my sweetie. You are not stupid at all my friend! With the cancer scare, I truly believe you and your doctor responded in the best way and removed the growths because of the possible risks. I do not have a medical background but I think you are feeling all of the feelings that a lot of us do. I in no way want to minimize your feelings and emotions; I want you to know that I am praying for you and sending you some big huge

>>>>>>>>>>>>>>>>>>>HUGS<<<<<<<<<<<<<<<<<<<<<<

Please take the time to acknowledge and feel your feelings and then stop beating yourself up. With your medical background, is there anyone (a doctor) you can talk to that you trust/admire?

It is so strange, but even now, my left side of my tummy where my ovary was (eaten up by endo) still bothers me...phantom pain? I don't know but today is still better than where I was at prior to my surgery.

My heart goes out to you; please, please try to get some rest and know that I care and I know the other Sisters do too!

Peace be with you sweetie!
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  #4  
Unread 12-25-2003, 12:09 PM
Desperate Please can anyone help?

It's not unusual to feel down - remember that your hormones may be in a tizzy. Unlike most of us, you didn't have the benefit or comfort of the pain meds that we had as you have too many intolerances so you suffered a little more and that is bound to get you down. Just tell yourself that it is only temporary and that you are on the mend.
I am also 52 and just had my surgery 7 weeks ago - my fibroid was 8 cms and outside the uterus - so I ended up having everything out.
At my 6 weeks post-op appointment I asked my surgeon if fibroids are ever malignant and he answered that they are not normally however, if they are - they are usually very nasty. I took that to mean that the cancer would be very serious.
My way of looking at my procedure is that - yes - I would have some discomfort for a while but here are my benefits:
- no more monthly periods
- no more unannounced periods (I was starting menopause too)
- no chance of cervical cancer
- no chance of ovarian cancer
- no more fibroids - they can grow after menopause
- no more pap smear exams
- no fear of an unplanned pregnancy
- no fear of an unexpected period
- my sex life has improved a great deal
Perhaps your medication needs to be tweaked a bit because you are feeling depressed. Your Dr. would be able to advise you.
I am back to work after 6 weeks and feeling great! I have no sense of loss but rather a whole lot of maybe's are no longer an issue for me. I know I made the right decision for me and who knows - you might have eventually made the same decision yourself in the end.
Right now I am on no medication - the estrogen pills stopped me from sleeping as I had too much in my system - I still have some left from the estrogen/testosterone (sp?) injection I was given at the hospital. Eventually I expect to get back the hot flashes and then I can take my pills but I feel like a million bucks.
You are not alone by feeling depressed, it happens to others too but it will pass.
I suspect that the doctor made the right suggestion for you but you likely feel that you didn't have a chance to make up your own mind. We are all different - I can only say it was the right decision for me.
  #5  
Unread 12-25-2003, 12:23 PM
Desperate Please can anyone help?

Hello Jasmine

I am in there with you! I have been trying to avoid surgery for years after several episodes of heavy bleeding and pains due to large fibroids. Each time the doctors were telling me that I needed an hyst. and every time I refused and managed to cope. I thought I was out of it when I reached menopause but over 2 years ago I had these excruciating pains that were coming and going and 2 months ago they discovered that I had a bleeding ovarian cyst on top of huge fibroids. Again the doctors were talking of hysterectomy and this time they were also saying that there was a possibility of cancer. So I had to give in. But I had time to think about it and visited this site many times before the op. Now I am glad to have done it. Like you the ovary that had the cyst is still bothering me at the moment but this will go stop. It takes time to heal.

Probably the diagnostic of possible cancer obliterated every other thought when you were first told about the hyst. Now that the surgery has been performed, you mind does no longer focus on the cancer threat but on the surgery with the realisation of what has been done to you.

Please talk to your doctor and your husband about how you feel. The menopause does not mean the end of problems andalthough your fibroids took a long time to grow at first, their growth may have accelerated quite dramatically later as in my case.

You will see from visiting this site that the post op. pains can be coped with with the help of medications. In my case I was petrified before the op. but have found that I have had nearly no post op. pains.

You are right to go to see your doctor and I am sure he will be able to reassure you.

Have faith, sweetie. We are all with you.
Nicole
  #6  
Unread 12-25-2003, 12:33 PM
Desperate Please can anyone help?

Thank you for input. This was absolutely the wrong decision for me. And I don't mean to seem unappreciative. And I really appreciate the HUGS and best wishes! However, Fibroids never become cancer. Masses seen on sonogram or palpated can be sarcomas but sarcomas are RARE, not just uncommon, but RARE. I can not possibly have enough procedures or surgeries to prevent my ever having cancer. Based on this doctors logic I would have both breasts removed, for example, in order to prevent a furthur riskof brest cancer. A decision to have surgery should not be predicated on fear or the "what ifs". I felt like a million bucks before the surgery with the exception of the minor nagging pain in my side, and now I feel like garbage. ACOG (American College of Obstetrics and Gynecology) has guidelines for performing surgical procedures and I did not meet the criteria. Asymptomatic fibroids should be watched not operated on.
  #7  
Unread 12-25-2003, 01:50 PM
Desperate Please can anyone help?

Jasmine, before my surgery, I was blaming fibroids for all my pain. I thought they made my uterus big and lumpy and pressed on my bladder. Now that it's over, the real culprit was endo, and it's fixed. As best I can figure, my uterus was tethered down over my bladder and I felt like I had to go everytime I had 2 oz. of urine. It wasn't much of a life. It was pretty bad for two years while I was trying to find a doctor that would take my endo seriously and do something about it. I approved them removing my ovaries because they hurt. It turns out they were all crusted over with scars.

Maybe it's your ovaries that hurt, if they aren't gone and your pain is not in the middle of your abdomen.

Anyway, I feel really secure that it was the right thing for me. There was a long list of reasons. I got caught in the backlash where doctors were reluctant to do it, and had plenty of time to read and think about it. You don't say how old you are, but I only had two years to menopause anyway. I'm sorry you feel the way you do.
  #8  
Unread 12-26-2003, 03:28 AM
Desperate Please can anyone help?

Jasmine,

I am so sorry that you regret having your surgery, and that you are feeling depressed. The only thing that I can tell you at this point is to try to give yourself some time to heal. Having a hysterectomy is a major surgery, and it can affect us physically, emotionally, mentally, etc. It does take time. If possible, try to focus on something positive in your life or speak to someone about how you are feeling. Not all doctors are like the one that you unfortunately had. But, now you need to focus on getting better and getting stronger. I understand your sense of loss. Please allow yourself time to mourn, but then try to focus on better days that lie ahead for you in the future. Please feel free to vent, rage, cry, or express yourself in any way that you feel that you need to at this website. We are here for you. We may not have the answers or solutions you need, but we are here to share our advice, provide some comfort, and sometimes just to provide a listening ear.
  #9  
Unread 12-26-2003, 09:27 AM
Desperate Please can anyone help?

Jasmine,
I feel your pain. It's been almost five months for me, and I too wonder if I needed the surgery or not. I had normal periods, no heavy bleeding, but a tearing pain on my left side. It was a huge cyst, and endo bearing down on my bowels. My DR talked to my husband and me about removing everthing because of the (Could happens) I went for everything removed. Now have night sweats, mood swings, insomnia. But also like you, I NEVER want my ab cut into like that again!!! I'm still dealing with the constant sore ab. I am now of the mind set that "you cant unring a bell" so I'm trying to get on with life. No it's not always easy, but Life isn't easy. You will feel better, but it takes alot of time. Some women have it very easy, other's don't. And the feeling that you can't just "get over this" is a tough one to take. I cried on for the first month that this was the worst decision I ever made, now I still cry over it at times. So please know you are not alone, your feeling are natural, and it will get easier.
Best of Luck, K.
  #10  
Unread 12-26-2003, 09:32 AM
Desperate Please can anyone help?

Jasmine:
Have to disagree with you on the sarcoma issue. Yes..it is quite rare but it does happen. As an RN on a surgical floor who hemmed and hawed about having a hysterectomy for a fibroid, I took care of 2 women in one week who had to have bladder diversions due to uterine sarcoma (from a fibroid) invading their bladders. That freaked me out and I scheduled my surgery. Turns out my fibroid was larger than they thought ( I was asymptomatic as well) and I would have had serious problems down the road if I didn't have it removed. It does happen - one just needs to weigh the pros and cons.
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