Scared to death

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Hello My Sisters,

I was just told yesterday that I was going to be needing a hysterectomy. I was Urgently treated last week with severe lower abdomen and pelvic pain, which had been going on during my cylce for the last 6 months. I had an ablation for endometriosis 4 years ago, but it has come back and it did with a vengence. I now have fibroids and a polyp on my left ovary, and my right ovary has fibroids. I am in such severe pain 2 to 3 days before I bleed, and then I bleed for a 2 or 3 and I'm still in pain for another 4 to 5 days after that. I had a pelvic ultrasound/abdominal ultrasound done and the findings were conclusive. I was diagnosed with IBS one month ago by my PCP. I see my GYN soon and he will be telling me what type of hysterectomy I will be having. I'm 43, do not want anymore children, yet what I've been reading about hysterectomies is scaring me. For instance, the fact that your risk for heart attack increases after a hysterectomy. Your sex drive goes down and you can become fatigued all the time. And, the recovery time, I don't understand it. I work a sedentary job, which I just started a month ago, and I'm afraid of losing my job, so I don't understand why I couldn't come back to work after a week. Has anyone experienced the option of going back to work sooner than expected? What is the reasoning behind the 6-week recovery. I'm so confused and don't know much about this procedure, even though I work in the medical field. I could use some help and support.

Jodilee

Hi Jodilee,
I'm so sorry to hear of your troubles. I'm 6 days post op today. Don't be afraid of the surgery.
There is a TON of excellent information on this site. Go to the top of the page and hit the PreOp tab and then go to the resources
https://www.hystersisters.com/vb2/lin...=browse&cid=20

There are a few ways to "do" a hysterectomy:
Abdominally (where they make an incision, either a bikini cut or vertically depending upon how much space they need)
Vaginally (where they enter you through your vagina) - there is no external cut
Laproscopically, or Lap assisted
Di Vinci - computer / robot assisted
You can read about each in the resourses or in the articles
https://www.hystersisters.com/vb2/articlelist_170.htm

I had a TAH - total abdominal hyst.
The things you'll need to discuss and decide with your doctors is if you will keep your cervix (I didn't) and your ovaries (I was able to keep one).

The risks you talked about increase with the use of certain types of hormones. You'd only need hormones if both ovaries are removed and you experience menopausal symptoms that affect your quality of life; some women find they don't actually need them at all. There's a whole section dedicated to hormones on this site. Look through the articles and resources and read some of the posts.

You'll be getting TONS of support here. Hang in there

Hi
Do you know how quickly you'll have surgery? If you have time, you may want a second opinion--both about whether to have a hysterectomy and what kind. You should ask about alternative treatments. I believe hysterectomys do not cure endometriosis, so you may want to talk to an endo metriosis specialist. I don't know about cysts on ovaries--and I didn't realize you could have afibroid on an ovary--but I know there are alternative treatments for uterine fibroids, like using birth control pills to manage bleeding and pain, or if they are small enough hysterospopic myomectomies, ....so unless your doc says its an emergency you probalby shold take time to investigate all the options.
I do think most of what you are concerned about comes when they remove the ovaries. So that is one question to ask your doc--is he proposing to remove them? Also I understand that if you keep your cervix you will have fewer compliations and problems with sex, so definitely ask about that.
I am today 3 weeks post op. And I am in no shape to go back to a sedentary job, even though I was exercising 4-7 times a week up until early January. The speed at which you go back to work depends in large part on what kind of surgery you have, but I don't know that any of the kinds allows for 1 week return to work, even for sedentary work. Laparascopic is definitely quicker than abdominal. But even laparascopically. ,you can have hundreds of stitches inside and its just major surgery, no two ways about it.
Deb

Jodilee007,
I understand your concerns about returning to work. However, it's important to give your body enough time to heal properly. If you return to work too soon, you put the healing process at risk. The stitches that you will have inside take time to heal. It's important to not use your abdominal muscles during this time. It is often uncomfortable to sit in a chair for extended time periods. Bed rest allows you to heal properly. I was also very tired for several weeks after surgery. If you aren't sleeping well at night, you'll need to take naps during the day. I would say take 3 weeks at the very least if you have a less invasive surgery. But if you have a TAH you should take the full six weeks.
I hope all goes well for you.

Hi there! I believe that that it would be illegal to fire you for a surgery that was deemed necessary by a doctor, and for taking the proper recovery time. I think that's what the family medical leave act is about, I could be wrong but you may want to check into it. Also, I have read many contradicting things about the lack of sex drive and that kind of stuff. From what I read it really just depends on the woman. Think about it this way, if you were to continue and keep things the way they are, do you really feel like having sex now? It's highly possible that after the hysterectomy, you will feel better, mentally and physically and even without hormones you may just feel better all around, which could help you feel like having sex? I am just speaking from things I have read, I am still waiting for my TAH, so I can't give definites. I realize that a job is SO important to have, especially for insurance reasons and stuff, but you really need to concentrate on what is going to make your body better. Down the road, if the right actions aren't taken you could end up in worse shape than you are now, and not even be able to work. If you have time, I agree, I would definitely get a second opinion. It really all depends on what you feel comfortable doing and the treatments that you have exhausted. Unless of course it's an emergency situation, then sometimes you just have to try and do what the doc says. I wish you the best of luck in deciding what is necessary for you, and hope you can feel better soon!

Hi
FMLA only applies to large companies, but it is true that if the company is large enough you should be protected--and if its covered by the FMLA there is probably an employee notice board with a poster about it, so you don't even have to ask someone.

So much depends on the kind of surgery you have. There are two women in my recovery date group that went back to work at 2 weeks. One had a laparascopic surgery and seems to be doing ok. The other had a da vinci and is doing fine, but only works a few hours a day anyway.

I am sure a lot also depends on the shape you are in now and what else you will have to do at home. Also sometimes there are complications that can delay your recovery--we have a few of those in our recovery group.
I had an abdominal surgery and definitely feel like I need the whole six weeks. But it was worth it to me to save my cervix.

I don't have endo so I don't know, but its possible that if you have tohave endo cleaned up that may delay your recovery--definitely a q for the doctor.

Having said all that though I still think you should have a second opinion about appropriate treatment, preferably with an endo specialist. As I understand it a hysterectomy does not cure endo. I know there are other treatments for fibroids as I tried some and was not a good candidate for others--you should figure out if any of them make sense for you. I don't know anything about what alternative treatments might be for cysts. I'm sure the tests were definitive for what the problem is but its not necessarily definitive about how best to treat them.

If you don't want a hysterectomy, or are not sure that its right for you, then there definitely are steps you can take before the surgery, unless for some reason its an emergency rushsurgery...

You might try the endo forum here.
Deb

I'm 8 weeks post-op. I kept my ovaries but lost my cervix (due to a huge fibroid in the middle of it). The nurses and docs reassured me beforehand that most female sexual response is in the lower 2/3 of the vagina and the clitoris, although some women DO like the sensation of something hitting their cervix. I didn't (see fibroid -- it HURT!) but I haven't lost my sex drive post-op -- I still have good orgasms. In a way, they're more pleasant, and I feel better about myself, because my uterus isn't "weeping" (I had constant discharge!).

Part of a 6 week recovery for TAH is because of 1. incisions healing, both internally and externally; 2. fascia regenerating (connective tissue between skin and muscle -- can be numb OR tingly at any time), and 3. muscles going back into place after having been spread open (mostly within 2 weeks of surgery). You'll be tired for a lot of the recovery period; I concur with the women here when they say you will need all of the six weeks. I couldn't drive for 2 weeks, and even then it was tiring, esp. when I rounded corners. I just stopped using the pillow with the seat belt about 2 weeks ago. I didn't drive distances over 1/2 hour until then either.

I didn't have job concerns quite like yours (I teach college, and had my TAH done during our "intersession", which I don't usually teach) But since I'm an adjunct faculty (read: P/T) I didn't make much noise about the surgery before I had it. Didn't want to have someone use it against me somehow. Even now I'm glad I'm on a reduced load this semester, because I'll have 1-2 good days and then get really tired. At this point, if I'm worn down, my stomach will feel like lead.

Good luck

You may want to look at http://www.dol.gov/esa/whd/fmla/ regarding FMLA. In summary, it depends on how big your employer is, in addition to if your employer has FMLA benefits, and if your employer has to provide this benefit according to your state's laws. I know in California, we have the California Family Medical Leave Act, which applies to employers that have 50+ employees. By law, your employer cannot use your surgery to discriminate against you or use it as retaliation by firing you because of it.

Please do not use my advice as legal employee advice...if you have any concerns, get the facts from your HR department to see what kind of benefits you would be eligible for, or contact any employee legal advocate organization or your state's employment benefits department.

Good luck on your surgery!

Thank you, All of you for your advice and stories. I will certainly look into the FMLA Act and speak to my supervisor after my doctor has decided what type of hysterectomy I will be getting. I've read up on the Da'Vinci hyst, and unfortunately there is no one around here who does that one. But your words and responses were great support to me sisters....thank you
Jodi