Ladies... For those of you who have had a hysterectomy

[luckywife]

If you don't mind and if it's not too personal, could you please share your experience with me?

I am 31 years old with severe endometriosis and a history of ovarian cysts. I had my left ovary removed 2 years ago, it was damaged and had a 6cm cyst on it, at the time my other ovary was fine. About a year ago I started having terrible pains again, this time on my right side and my periods were becoming worse with each month. It was discovered then that I had developed several cysts on my remaining ovary so my GYN put me on Lupron...BIG MISTAKE!

Anyway, that didn't help and since I have lived with the pain from endo for so many years, I decided, with my doctor and DH that I would have a hysterectomy. I've tried, as I said, Lupron, been on the pill, nothing has helped. I have 2 precious DS's and do not want anymore children so that wasn't an issue when deciding to have this surgery.

I'm scared though. My surgery is in only 4 more days!

I would love to hear some experiences others have had with this surgery. What was recovery like? How long did it take before you felt back to your old self again? I realize everyone is different but just a general idea of how long I can expect to be on the mend would be great.

Sorry this is long and thanks in advance for reading

 

[TEENEE]

I had my surgery almost 15 months ago. The first few days were rough. After about a week I was ready to start taking short trips to the store with my dh. It wasn't that I was in pain, just tired. Finding clothes to wear wasn't fun. Make sure you have loose fitting clothes. Sweat pants and dresses worked best for me when I went out of the house. When I tell you this next part keep in mind that I heal slowly from surgery. When it was time to go back to work after 6 weeks I was still feeling a bit worn out. It took about 10 months for me to really feel good again. That doesn't mean I was miserable for 10 months, just got tired more easily than I usually do. You won't regret the surgery. After being in pain for so long this will be a blessing. While you are recovering keep in mind that the new discomfort is temporary. You will be fine. Take your time recovering, you only get one chance to heal properly. Good luck. If you have any other questions feel free to ask.

Tina

 

[judi]

I just had my hysterectomy 7 weeks ago. I found a lot of help at www.hystersisters.com The first 3 weeks were the hardest for me and then each week I feel a bit better. Recovery will also depend on what kind of hysterectomy you have. Good luck, and please check out hystersisters, these women are going through the same thing as you.

 

[TEENEE]

Judi, thanks for mentioning hystersisters. I got in a hurry and forgot to tell her about it. I spent a lot of time on that site prior to my hyster. There is a lot of great info there.

 

[lovetheparks]

Good luck with your upcoming surgery.

I'm interested to hear how it goes for you, I am going to have the surgery in September/October time frame.

 

[princesspumpkin]

I had a hys (as well as both ovaries removed) over 4 years ago. Previously, I had had a c-section 5 years before that. My c-section recovery was a breeze. Up and down steps once I got home without a problem, driving 7 days later (shhhh, don't tell). I always said that I wanted to return to work after 3 weeks (I felt so good), and to take my maternity time later one - like when she was teething. That being said, I expected my hys to be similar. Boy was I wrong. The recovery pain was much worse. I didn't walk upright for my entire hospital stay. On my day of discharge, it took the longest time just to get out of bed to get ready to go. Once I got home, all I did was lay around. Pain medication wasn't touching it. The hormones were wacky (I did start HRT before leaving the hospital, but a period of adjustment was necessary). I had everything taken out because I had ovarian cancer. I feel good about my decision because I don't have to worry about getting that type of cancer again, but with the changes that have occured to my body (the weight gain around my mid-section, the continual need for HRT - I have tried to go off of them but my side effects are atrocious), I often wonder if I should have just removed only the ovaries and tubes and left my uterus. I think that because of my age at the time (36), this may also have attributed to my poor recovery. I think that if I were much closer to menopause at the time, maybe it wouldn't have been so bad. This is just my experience, remember (I had the abdominal incision version). I'm a nurse and have taken care of many hys patients and have seen many old ladies who faired better than I did. Is just removing the other ovary an option?

 

[DisMN]

I had one 2 months ago and haven't felt this good in years. I'd been a member of hystersisters for several years prior to that and they were a huge help in calming my fears!

I agree about the loose clothing and the tiredness though...I'm just getting to the point of my clothes fitting well again and not HAVING to take naps. It was sooooooooooooooooooo worth it.......

 

[Lynn CC]

I had a hysterectomy (I still have my ovaries because they didn't want to remove them for hormonal reasons because I had a breast lump removed before that), A year or so before the surgery I had an awful time until the symptoms (extremely heavy friends all the time, and a toothache-like pain constantly) interfered so much I agreed to have the surgery, which I never thought I would. It was 2 years ago this past Sept.... I was 41.
I feel GREAT, now. I'm so glad I had it.

I found a surgeon to do it the "new way", no incision. They sectioned everything and got it out that way. They wern't sure it was going to be successful, but as soon as I woke up that was my first question, and yes I did have a great, caring, patient surgeon because my pelvis is very small.

Recovery wasn't too bad, I had pain meds the first night in the hospital and then I went home after another night, even though I was ready the next day!
Recovery took a good 6 weeks for me before I was back to "the new me". During those 6 weeks I was VERY tired, I gradually got up off the couch and did a few things here and there until I built up my strength again. I don't know why it took so much out of me, but it did. I had 2 other surgeries since I was 40, so maybe that had something to do with it too.

If you do have it done, just try to take some time to relax and not feel guilty about it. My DH and DS were wonderful and knew I'd be back on my feet when I felt I could, I'm not one to sit a minute during a normal day(except to DIS, of course)!

If you have any other questions, feel free to pm me. I didn't want to get into detail here LOL!

 

[mtblujeans]

My situation sounds very similar to Princesspumpkin's! I was 37 and had a 1 year old. I had had an abdominal c-section with my last baby and they did the surgery through the c-section scar. The c-section was hard on me and the hysterectomy was about the same. I had everything removed because I was concerned about facing ovarian cancer in my later years and reasoned I would prefer to face this type of surgery while I was younger and healthy enough to recover quickly. It was an emotional time and I remember crying quite a bit after I went home from the surgery....no real reason why that I can remember....just uncertainty as to whether I had made the right decision and fear, I suppose.

I have been on HRT since then and I really, personally, struggle with that now. I have tried to reduce the doseage and it has affected me mentally and physically. I ended up going right back up to the higher dose and not all of the symptoms of reduction have gone away....I am still very, very 'forgetful' and it can be scary!

I have never missed the monthly problems the hysterectomy have "solved" as I had alot of monthly problems with heavy bleeding and pain. They found several cysts in 1 of the ovaries and the surgeon said that explained some symptoms.

I have been reading that animal activists are pressuring the pharm company that makes the HRT I take to stop making it so the pharm company is looking at making a plant-based HRT. I am concerned about what the future of HRT will be and I have not had a chance to talk to my doctor about it. That would be my only recommendation to you would be to discuss at length what your options are after the surgery.

Take good care of yourself and give yourself the time you need to heal. Patience will go a long way now....

 

[Longsx3]

I had my Hysterectomy in 2002 @ 32 and my background sounds very similar to yours. I had a cyst removed in 1995 prior to getting pregnant with DD. I had to use clomid to concieve and DD was born 8/96. In late 97 I started having pain again, in early 98 they removed my right ovary, i had some adhesions. In 2000 we were trying to get pregnant again but I had another cyst and it looked like my tube was blocked, so they went in to remove they cyst and repair the tube...there were lots of adehesions and they surgen nicked my bowel...which led to 6weeks over an 8week period in the hospital, I am surprised I don't glow from all the CT's. In 2001 we were going to try invitro when another very large cyst showed on the Ultrasound. The doc said he didn't recommend be ever carrying a baby again and said I needed the cyst removed. I said take eerything! My Hyst. took 8 hours normally they take 2 but my surgeon was prepared for 12 so not so bad. The recovery time was about 3weeks...I heal quickly.

The 4yrs since my surgery I have felt better than the 4 yrs prior. Originally I was doing HRT using a patch, but it didn't stay stuck well. I probably haven't used them in 18 months, with very little side effects...occaisionally I feel warm but no sweating or anything else. I have thought about trying the HRT that is topical and absorbed through the skin but since I feel fine I have not persued it.

Good luck with your surgery!

 

[luckywife]

Thanks so much everyone for posting your experiences. It really helps to know in advance what I might be in for.

princesspumpkin Yes, it would probably be possibke to just remove the other ovary. The thing is, I know that somewhere down the road I'll have to have a hysterectomy so I decided I would rather do it now instead of removing the other ovary and then a year from now, going back again to have everything else removed. As scared as I am, I would rather just get it over with now and not have to worry about another surgery for the same problems later on.

When I had my ovary removed in 2004, I had the abdominal incision type surgery. I have heard of doctors being able to do it other ways (I'm sure the word is censored) and I definitely would have opted for that way but my doctor feels that with all the scar tissue I have it would be too much of a risk to do it any other way.

Doc has also talked to me about HRT but I've been so worried and concerned about the actual surgery, I really haven't given that much thought. What exactly are the side effects I can expect from HRT? Since I've stopped Lurpon over 6 months ago, I still have hot flashes and night sweats. I also gained 15 pounds from Lurpon so I'm hoping that HRT won't cause more weight gain

My DH will be taking some time off work to help me out so how long should I expect to need help with things? We have an 11 year old who is in school all day but we also have a 3 year old. From reading these posts I'm expecting now to be more tired than usual for several weeks and I remember that happening with the last surgery I had. A nap for a few hours every afternoon did wonders for making me feel a little better.

Thank you for sharing the link to hystersisters. I plan on checking that site out now. It sounds like just what I need

Thanks again to all of you for taking time to share your stories with me

 

[mtblujeans]

I haven't noticed any side effects from taking HRT. (ETA: I take Premarin 1.25) I did not gain weight after my surgery. I just turned 50 and I have gained a little weight over the years but I just figured it was normal for the aging process.

When I cut down on the HRT, tho', my eyes immediately worsened, I started 'drying up inside', and my memory left me! My eyes have improved and am not having 'internal symptoms' any more but I am still having some trouble with memory. Perhaps I had such symptoms in cutting down on the HRT because I am closer to actual menopause age.

 

[Barb D]

You've gotten lots of good information, so I'll just post my funny story:

After my surgery, I was reading the bill (paid for by insurance) aloud to DH.

"Anesthesia: $300
Surgical assistant: $600
Pharmacy: $62 ... " *

when DD12 piped in, "Hysterectomy and no more periods for the rest of your life? PRICELESS!"

(* Amounts made up because I honestly don't remember how much they were.)

 

[Jillpie]

Hi Donna, I just went through this, 7 weeks ago. I had a complete hysterectomy, with an abdominal incision. I was in the hospital for four days, with no complications. My doc said that what he found was the second worst case of endometriosus he had ever seen in twenty years! Its weird though, I didn't have severe pain (I'm 45) until this past Fall.

I was very surprised with the recovery. I have never been in better shape, I figured because of this, it would be quick. It was not. It took the entire 6 weeks, so just prepare yourself for that. I took pain meds for four weeks. The first three weeks were pretty hard, so I would just say to pretty much stay on the couch or bed and do nothing. Watch TV, read. My DH stayed home for a week. With a 3 year old, you may need more help that that. Do you have other help that can come over? I don't know if your DH can take any more time than that. My biggest advice to you is not to set your recovery expectations to high, meaning, not to let yourself think (like I did) that this will take a couple of weeks. If you do that, you'll be fine. My strength really didn't fully come back until 6 weeks, just like they said. Good luck and you'll do great.

 

[luckywife]

You've gotten lots of good information, so I'll just post my funny story:

After my surgery, I was reading the bill (paid for by insurance) aloud to DH.

"Anesthesia: $300
Surgical assistant: $600
Pharmacy: $62 ... " *

when DD12 piped in, "Hysterectomy and no more periods for the rest of your life? PRICELESS!"

(* Amounts made up because I honestly don't remember how much they were.)

Oh gosh! Thank you so much for sharing that story. I needed a good laugh today and that did the trick!!


Jillpie-Just like I have said to everyone else, thank you for sharing your story with me. I do have some help coming in after DH goes back to work I'm just a little worried about how reliable it will be. DH has plenty of vacation time each year but we also have vacations planned for this summer so I don't want him to use everything on staying home with me. I will deal with that issue, should it arrise, at a later time.

For those who have responded or anyone else who reads this, what pain meds were given to you to take at home? I'm a little concerned about them not working properly. Although I'm sure that probably won't happen, I am just "borrowing" worry for everything right now.


Longsx3-Did your doc tell you why your surgery took so long? That scared the daylights out of me when I read yours took 8 hours. Can anyone else share about how long their surgery took, if they were told by the doctor or family members who waited at the hospital. The only thing my doctor told me was that he wouldn't give me a set time because it all depended on what he found when he started the surgery.

mtblujeans I had no idea that any of this could affect memory. Thank you for sharing so much information about possible side effects. I am really worried about night sweats more than anything right now, I hate them and it makes sleeping so uncomfortable!

I've said it before but I must repeat myself, thank you ladies for sharing so much personal info with me.

 

[Bildmouse]

I had mine done 2 1/2 years ago at the age of 51 because of years or irregular bleeding that was just getting worse and heavier. Best thing I ever did and I'm sorry I waited so long to do it. I had surgery early Friday morning and went home Sunday. The only pain meds I had were the first day when I was on a morphine pump and didn't use much of that. I agree that I felt really tired for a while but I was back at work in four weeks (most of what I do is sitting down and I let everyone else do any lifting that was necessary). The week before I went back to work my DH and I went on two day trip about 3 hours from home and I walked a lot and felt great. Everyone is different with their recovery. Good luck with your surgery!!

 

[mrsdon]

I almost hesitate to post my experience.
I had mine done about 15 months ago,
It was done with a laser through the belly button and I have NEVER been happier.
My monthlys were ruining my life,
I am on HRT and taking a very low dose.
I do sometimes have a little bit of mood swings and sometimes if feels like Im still ovulatiing.
But over all, Im a very happy camper.
Debbie

 

[princesspumpkin]

When I went home after surgery, I took tylenol with codeine and motrin. I started out on one dose of premarin (can't remember the exact amount) and recently cut it down to half. When I tried to stop completely, I didn't last. I was sooo moody (and I'm already a Virgo, so poor DH!), the hot sweats were a killer (more than just a nusance), and the loss of sleep was brutal (I work night shift so sleep was a necessity). I totally didn't relate my memory loss to all of this. Now that I've cut down on my HRT dosage, I can see the memory thing getting worse (not extremely bad, but I always prided myself on having a good memory).

 

[Mai Ku Tiki]

Aloha! Still have my ovaries, but uterus removed 15 yrs ago at age 37. BEST THING I EVER DID! After 4 yrs of tests for undiagnosed chronic pain and bleeding following C-section, I had a ******l operation. Recovered in 3 wks!!! (Helped by a morphine pump in hospital...boy...I've NEVER been so happy !!
But pain, bleeding, discomfort was gone forever...Now...I'm blessed with all the joys of menopause and have just started HRT. Men have NO CLUE! We have to deal with all of this PLUS PANTYHOSE!!!!!

HOW LOVELY TO BE A WOMAN!!!!

Best wishes...All shall be well....
~Rose~

 

[debabe723]

I had mine 2 years ago and just had my uterus removed. I'd had fibroids for years but other than heavy bleeding during my periods, I had no pain. Then I started hemmoraging at Costco (now that was a fun experience ) and I immediately drove myself to the ER. They gave me a D&C to try and stop the bleeding but it didn't work so it was off to the OR. Since I only had my uterus removed, the surgery took about 90 minutes (and the Dr removed a 6lb fibroid...she congratulated me on the delivery of my 2nd child ). I was in the hospital a total of 43 hours, start to finish. I had to have 3 blood transfusions due to the loss of blood. Being a single mom, I had to manage on my own and didn't drive for a week but had no choice after that. I was very, very tired, mostly due to the blood lose but by 6 weeks was doing much better and went back to work full-time. I did not take any pain medication other than morphine the first night in the hospital...I just don't do well with medication and try to avoid it if possible. And because it was an emergency, I had to have a vertical incision from above my belly button down to and including my C-section scar (probably the worse thing about the whole experience...no more belly shirts for me LOL).
I also 2nd going to the hystersisters site...I didn't get to visit before my surgery but they were great afterwards.
Good luck...you will do great!