What to Expect??

Hello Sisters.... My First Post

9 days since I had LTVH and cystocele repair. I realize that with the combination of these surgeries that I have more to heal from but I just feel overwhelmed with pain - I think I have a UTI - already call ob/gyn, feeling ripped off with having endo/adenomyosis & prolapsed uterus & needing a hysterectomy, grieving that I can't have any more babies - I might have if I hadn't had the health problems & complicated pregnancies, scared of the hormone jungle ahead. I did hormone therapy to treat endo several years ago so I've been thru menopause symptoms before - the hot flashes & night sweats are in full swing now. I feel numb & can't even cry about all this - like it's just too much to admit or accept.

Please send thots of encouragement & share your experiences - I need to see the light & that things will look up...

Thanks!
Kim

Hi (((Kim))) welcome to Hystersisters! I'm glad you found us. I've moved your post over here to the Post Op forum where you'll find more ladies in similar circumstances.

I had my hyst for prolapse, too... a TVH with BSO and A&P repairs (for cystocele and rectocele). Yes, the combination of surgeries does seem to cause a little more pain than the hyst alone, at least for some of us.

You are still in the very early post op days... are you still taking pain meds to help with the pain? I'm glad you called the DR's office... are you going to get in to get seen? It's important to check to see if you have a UTI and get it treated if you do. UTI's and yeast infections are, unfortunately, not that uncommon in the early post op weeks.

Are you going to be on HRT? Your post sounds like perhaps not because of the endo history? If that's the case, you might want to check out the No-Hormone Desert Oasis forum to read experiences of other ladies who are not on HRT. There are other meds your DR can prescribe to help with your menopausal symptoms and help you keep your bones healthy.

Another great place to visit is our Aching Hearts forum, which was created as a place for ladies who are grieving the loss of their ability to have babies as a result of the surgery. The ladies there are wonderful listeners and very generous with their s.

Recovery can feel like it's taking forever at times, but it does get better... and meanwhile, you're among friends


-Linda

Thankyou for responding so quickly Linda! Also, for moving my post to this forum. Yes, I'm early post-op & even tho having this surgery has been something I've wrestled with for years, the adenomyosis got so painful I couldn't get by for long without powerful pain meds.... but the grieving... I didn't expect all this grieving....I thot I had accepted that I couldn't have more kids already....yes, I'll check out the Aching Hearts forum.

Yes, I'm still taking Percocet. Pain management has been difficult due to my being on the Percocet already to treat pelvic pain. It helped alot when one of the nurses at the hospital told my Dr that many dr's are prescribing Percocet 10/350 instead of 5/350 so the Percocet doesn't wear off before the Tylenol dosage is allowed again.

I had my ovaries taken out because of my history with endo but I'm having such hot flashes & night sweats already. Do any women find that these symptoms of menopause subside after awhile? I really don't want the symptoms of endo to return ~pain~ but what to do about being soaked in sweat so much of the time?? Ackkk...

I started on Macrobid today to treat the uti. I have a history of uti's & with this bladder repair I'm sure my urinary tract didn't have much chance of avoiding infection. I see my ob for my post-op app next week.

So glad to start meeting people who can relate. Thanks so much for your input!

Kim




*************
Hi (((Kim))) welcome to Hystersisters! I'm glad you found us. I've moved your post over here to the Post Op forum where you'll find more ladies in similar circumstances.

I had my hyst for prolapse, too... a TVH with BSO and A&P repairs (for cystocele and rectocele). Yes, the combination of surgeries does seem to cause a little more pain than the hyst alone, at least for some of us.

You are still in the very early post op days... are you still taking pain meds to help with the pain? I'm glad you called the DR's office... are you going to get in to get seen? It's important to check to see if you have a UTI and get it treated if you do. UTI's and yeast infections are, unfortunately, not that uncommon in the early post op weeks.

Are you going to be on HRT? Your post sounds like perhaps not because of the endo history? If that's the case, you might want to check out the No-Hormone Desert Oasis forum to read experiences of other ladies who are not on HRT. There are other meds your DR can prescribe to help with your menopausal symptoms and help you keep your bones healthy.

Another great place to visit is our Aching Hearts forum, which was created as a place for ladies who are grieving the loss of their ability to have babies as a result of the surgery. The ladies there are wonderful listeners and very generous with their s.

Recovery can feel like it's taking forever at times, but it does get better... and meanwhile, you're among friends


-Linda


__________________

Hi Kim,
i too am new here. I can sympathise, i am only 27 and had my first baby in oct last year, due to complications with my emergency c sect ( thankyou surgeon) i sufferred 3 bouts of severe heamoraging resulting in the last case where i bled to death, luckily resucitated had 14 units blood and TAH.
I always wanted a large family so i know the grieving you are going through. i am finding talking to people that understand and family a huge help. though i have app with consultant to discuss why it happened and why took them so long to act.
The whole thing you have been through is massive so give yourself time to grieve the loss of so many things as am sure you feel cheated.
You are welcome to mail me or reply if you want to chat.

Sending you lots of healing vibes physically and mentally...it takes longer for the mind to heal so don't rush yourself, deal with issues as you feel ready.

Love and hugs
Sam xx

Oh Sam -- You Sweet Girl... You're soo young to have to go thru this. What a doll to send me such encouragement. And what a miracle that you survived your ordeal!! What type of consultant are you going to? btw -- just curious -- Did you have endometriosis? I'm trying to gather info on hrt for women who had endo before their hysterectomy.

I had extremely complicated, stressful pregnancies so between that factor & my age - 40yrs we had decided to not have any more children, but I don't think I'll ever stop being baby hungry. I guess having this hysterectomy is forcing me to deal with it where I could still secretly hope that I would have an "accident" pregnancy before this...

Thanks again for your response Sam!

(((Hugs)))
Kim



***************************
Hi Kim,
i too am new here. I can sympathise, i am only 27 and had my first baby in oct last year, due to complications with my emergency c sect ( thankyou surgeon) i sufferred 3 bouts of severe heamoraging resulting in the last case where i bled to death, luckily resucitated had 14 units blood and TAH.
I always wanted a large family so i know the grieving you are going through. i am finding talking to people that understand and family a huge help. though i have app with consultant to discuss why it happened and why took them so long to act.
The whole thing you have been through is massive so give yourself time to grieve the loss of so many things as am sure you feel cheated.
You are welcome to mail me or reply if you want to chat.

Sending you lots of healing vibes physically and mentally...it takes longer for the mind to heal so don't rush yourself, deal with issues as you feel ready.

Love and hugs
Sam xx

Dear Kim, I am new too. I didn't find these girls until five days after my surgery. I am still learning how to use the website and am learning a lot. I wish I had found them BEFORE I had surgery.

My biggest fear at this point is that I overdid the first few days I was home and that I have caused some internal damage to my repairs. After suffering with bad abdominal pain and swelling for four days, I called the doctor and he "thinks" I have a UTI and gave me 100 mg. Nitrofur Mono-Macro and some Phenazopryidine 200 mg (turns urine red). I started on the medication late yesterday and feel a little better, but still pretty miserable. I guess the Dilaudid and Motrin 600 was covering up, to some extent, the pain and fever (which I thought was hot flashes).

With the help of my Lace Super Dieters Tea I am keeping my bowels moving, but second BM was difficult and since then (& washing a load of clothes) have felt like my colon has fallen down on my LEFT side or something has fallen on it. I am praying it is my imagination or maybe my UTI infecton is causing swelling or pressure on my LEFT colon side. Anyone with this feeling like the left side of your colon has gradually moved down after surgery?

I am truly sorry you cannot have more children. They are a blessing. I just turned fifty and have a boy and girl finishing up in college; we were hoping NOT to have anymore, but I would have felt differently had I been in your shoes and if I was younger. I truly believe there is a purpose for everything that happens...even though we don't always understand why. I pray you will be blessed in many other ways and will find your way of being able to "let this disappointment go" when you have grieved how ever long you need to.

Speaking of letting disappointment go, maybe now is a good time to share with everyone some of my stresses and what led up to my hysterectomy. The past four years have been extremely stressful for me. After my father-in-law had heart bypass surgery, both of my parents got sick in 2001. I stayed nearly three months 100 miles from home with my Daddy and died with a super infection shortly before we thought he was coming home. In the middle of this my Mom was diagnosed with three meningiomas (non-malignant brain tumors), had surgery and developed Parkinsons Disease. My 21 year old daughter developed a rare type ovarian cancer and had an ovary out and extensive chemo.

Then I fell and shortly after started bleeding heavily vaginally and off and on rectally (December 2003). I have been taking one Xanax at night and as needed since my daughter got sick....felt like I was going bananas with uncontrolled stress, but probably hormonal as well. Dr. said I needed a Hyst. Had a colonoscopy and couldn't find cause of bleeding. Took birth control pills to stop the vaginal bleeding. Got a second opinion four months later and rescheduled my surgery four times because of everything from an abcessed tooth to my son begging me to change it because it was not scheduled in the right "sign" and I could bleed to death (honest). My doctor said my uterus was enlarged with a fibroid tumor and he thought I had adenmyosis and my cervix had dropped. Together with the bleeding, he said he didn't expect me to be the one in 25 with outside adhesions and other problems, but guess I was unlucky enough to be that one. Also, had endometriosis inside and out. I had problems with my bladder completely emptying a year and a half ago and had to learn to catheterize myself for a while (this was a terrible experience for me). My gyn surgeon found lots of endo around my bladder all the way up around my ovaries. (I am wondering if the endo was down below, did he get it all? I also had my bladder and rectum repaired. Also, found a small hernia in my small intesting and repaired that. I don't know how on earth he got all of this done vaginally???

I don't know if all of the pain is from my surgery, over doing it (which I have corrected), and/or the UTI, but I felt better in the hospital than I have this week. Kim, I can sympathize with you on the pain. I can't figure out what to do. It hurts to sit and feels heavy and pressure down below when walking. The bed feels pretty good, but tired of staring at the ceiling and it is hard to sort mail or do paper work in bed.

We have to think positive and know all of this pain will soon pass, but if it doesn't, I am not waiting until Feb. 8th to see the doctor. Welcome and take care. I am trying. Normally, I wouldn't do this much "sharing" at once, but have learned the history of the girls helps us evaluate and compare our individual conditions.
*************************************************
Vaginal Hysterectomy 1/12/05 after bleeding, dropped cervix, enlarged tilted uterus, adenmyosis. Also, had Endometriosis inside Uterus and Out, Bladder, Rectal, and Small Bowel Hernia repair...and wondered why I felt bad and a bit crazy for the past two yrs? Bad Pap Smear in 2002 & D&C in 1999 for bleeding with some bad cells. Wondering why it took so long for the doctors to find all that was wrong. Also wondering when do we hear from the Pathology report of our hysterectomy? I am going to bed...I have worn myself out with this response.
***************************************************

Hello Redhead
Thankyou so much for posting. You ladies are doing so much for me - reaching out this way. It seems impossible that anyone could even comprehend the fear, pain, confusion, anxiety, chaos & then this website came along with real live women to support & nurture me thru this. I hope I can "Pay it Forward" or even pay you back somehow.

My uti discomfort is subsiding now, which makes all this much more manageable. I read a book call "Cystitis" one time & the author made a comment about how lonely having the experience of urinary tract infection is; being up in the middle of the night fevered, burning with every attempt to urinate & not being able to get meds until at least the next day. That's where I learned to rinse every time I went potty & to take some Tylenol, etc to cope with the pain. I have had them for years & it is never easier to cope with that horrible pain.

I have been just soaking my bed/pillow with night sweats & hot flashes so I've been having a lot of anxiety about whether or not to attempt some hrt to control the sweating. I'm so scared of having symptoms of endo return, which was the reason that I had the hysterectomy in the first place. Well, I've pretty much ruled out synthetic hormones & started using Arbonne's Prolief cream & haven't had any hot flashes yet today. Keeping my fingers crossed that this will be enough. Are you going to use any hormone therapy Red? I'd love to hear your opinions & any info you have on using hrt with history of endo.

Best wishes for your recovery & Thanks again for writing.

Kim

**************************
Dear Kim, I am new too. I didn't find these girls until five days after my surgery. I am still learning how to use the website and am learning a lot. I wish I had found them BEFORE I had surgery.

My biggest fear at this point is that I overdid the first few days I was home and that I have caused some internal damage to my repairs. After suffering with bad abdominal pain and swelling for four days, I called the doctor and he "thinks" I have a UTI and gave me 100 mg. Nitrofur Mono-Macro and some Phenazopryidine 200 mg (turns urine red). I started on the medication late yesterday and feel a little better, but still pretty miserable. I guess the Dilaudid and Motrin 600 was covering up, to some extent, the pain and fever (which I thought was hot flashes).

With the help of my Lace Super Dieters Tea I am keeping my bowels moving, but second BM was difficult and since then (& washing a load of clothes) have felt like my colon has fallen down on my LEFT side or something has fallen on it. I am praying it is my imagination or maybe my UTI infecton is causing swelling or pressure on my LEFT colon side. Anyone with this feeling like the left side of your colon has gradually moved down after surgery?

I am truly sorry you cannot have more children. They are a blessing. I just turned fifty and have a boy and girl finishing up in college; we were hoping NOT to have anymore, but I would have felt differently had I been in your shoes and if I was younger. I truly believe there is a purpose for everything that happens...even though we don't always understand why. I pray you will be blessed in many other ways and will find your way of being able to "let this disappointment go" when you have grieved how ever long you need to.

Speaking of letting disappointment go, maybe now is a good time to share with everyone some of my stresses and what led up to my hysterectomy. The past four years have been extremely stressful for me. After my father-in-law had heart bypass surgery, both of my parents got sick in 2001. I stayed nearly three months 100 miles from home with my Daddy and died with a super infection shortly before we thought he was coming home. In the middle of this my Mom was diagnosed with three meningiomas (non-malignant brain tumors), had surgery and developed Parkinsons Disease. My 21 year old daughter developed a rare type ovarian cancer and had an ovary out and extensive chemo.

Then I fell and shortly after started bleeding heavily vaginally and off and on rectally (December 2003). I have been taking one Xanax at night and as needed since my daughter got sick....felt like I was going bananas with uncontrolled stress, but probably hormonal as well. Dr. said I needed a Hyst. Had a colonoscopy and couldn't find cause of bleeding. Took birth control pills to stop the vaginal bleeding. Got a second opinion four months later and rescheduled my surgery four times because of everything from an abcessed tooth to my son begging me to change it because it was not scheduled in the right "sign" and I could bleed to death (honest). My doctor said my uterus was enlarged with a fibroid tumor and he thought I had adenmyosis and my cervix had dropped. Together with the bleeding, he said he didn't expect me to be the one in 25 with outside adhesions and other problems, but guess I was unlucky enough to be that one. Also, had endometriosis inside and out. I had problems with my bladder completely emptying a year and a half ago and had to learn to catheterize myself for a while (this was a terrible experience for me). My gyn surgeon found lots of endo around my bladder all the way up around my ovaries. (I am wondering if the endo was down below, did he get it all? I also had my bladder and rectum repaired. Also, found a small hernia in my small intesting and repaired that. I don't know how on earth he got all of this done vaginally???

I don't know if all of the pain is from my surgery, over doing it (which I have corrected), and/or the UTI, but I felt better in the hospital than I have this week. Kim, I can sympathize with you on the pain. I can't figure out what to do. It hurts to sit and feels heavy and pressure down below when walking. The bed feels pretty good, but tired of staring at the ceiling and it is hard to sort mail or do paper work in bed.

We have to think positive and know all of this pain will soon pass, but if it doesn't, I am not waiting until Feb. 8th to see the doctor. Welcome and take care. I am trying. Normally, I wouldn't do this much "sharing" at once, but have learned the history of the girls helps us evaluate and compare our individual conditions.
*************************************************
Vaginal Hysterectomy 1/12/05 after bleeding, dropped cervix, enlarged tilted uterus, adenmyosis. Also, had Endometriosis inside Uterus and Out, Bladder, Rectal, and Small Bowel Hernia repair...and wondered why I felt bad and a bit crazy for the past two yrs? Bad Pap Smear in 2002 & D&C in 1999 for bleeding with some bad cells. Wondering why it took so long for the doctors to find all that was wrong. Also wondering when do we hear from the Pathology report of our hysterectomy? I am going to bed...I have worn myself out with this response.
***************************************************

morning Kim and redhead,
it is so amazing to find women who feel and understand the growing amount of fears we have. i did not have endometriosis, i have always suffered from really bad periods. i was aneamic during my pg and had lost alot of blood in c sec. my consultant is the one i had during my pg and i am gunning for blood, as the surgeons that saved my life have already admitted something had obviosly gone wrong in csec as they had never seen anything like it. the heartbreaking thing is, i always want at least 3 children, yes i am blessed i have my son, however i am missing so much of my now only child growing up it makes me so mad.

reading your stories have made me feel rather humble in that you have been through so much. I really hope you both find some peace and wellbeing now, lord only knows you deserve it. i will pray for you both.

i have kept my ovaries but have still had some hot flushes, i am not sure if it is temporary while my hormones try and settle.

Redhead, i had nasty uti, they gave me four bags of antibiotics through drip and still i needed antibiotics when i came out, i had two courses, they were so strong they made me nauseus and headaches.
you will feel better as your tablets work i can assure you, i felt more poorly for couple of weeks when i came home, it is to be expected. you will feel better and stronger as time goes on. i am now 5 weeks post op today and still get good and bad days, though the bad are more tummy ache.
My biggest problem is panic attacks because of what happened and i have big bald patch on back of my head from the trauma.

We will all soon be sitting in the sun in summer thanking the lord it is all over and we are better, i look forward to them days and hopefully we can share them.

Sending you both the biggest hug, kisses and healing vibes
love sam xxx