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Worried about my daughter

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

Not particularly worried about cancer (endometrial tissue was fine), but it's still girl parts, so I'm going to vent here.

My daughter is 39 and had a uterine ablation on the 6th because of excessive almost daily bleeding. She also has pretty significant cramping and has all the hormonal pms stuff. The hope was that the ablation would take care of the bleeding and then the rest of the stuff wouldn't seem as bad. I packed up and got on the airplane to stay with her after surgery. She was absolutely fine the next day, went to the gym and has been actively exercising since. We had a nice time together. And she may have done too much, but she was told to do whatever she felt like.

Last week (around the 16th) she called upset because she had severe cramping. She figured it was about time for her period and was worried that while the ablation may have taken care of the bleeding, she was still cramping significantly. The pain got worse and she ended up in urgent care Friday evening. They tested for UTI and did a CBC and everything came back fine, so they sent her home on pain meds and an appointment with her gynecologist early this morning.

More tears this morning. She's so frustrated and frightened. The gyn didn't know what was going on, but ordered a CT scan and told her to come back in a week and to keep taking pain meds as needed. Now we're waiting for the CT appointment and she's a wreck (so am I). She's worried about missing work, worried about what might be wrong with her, and hating to be in pain.

I'm telling you, the older I get, the more discouraged I am about all the things that can go wrong with women. It seems like if something doesn't go wrong when you're younger and end up having a hysterectomy for whatever reason, it all just sits there and festers and gets cancer! Grrrrrrr.

Thanks for "listening".

Suzanne

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Suzanne,

I am so sorry. Its frustrating and upsetting enough when something happens to one of us, but when it happens to one of our kids, its worse. I'll keep you and your daughter in my prayers. You know that old song from 'Flower Drum Song'--"I Enjoy Being a Girl"? I think it was almost definitely written by a man.

Hugs and Best Regards,

Deborah

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

Hope your daughter gets her CAT scan soon, and it comes back normal. No matter how old our children get to be, we mothers worry about them. Unfortunately we think the worst until we know differently. Sending prayers for both you and your daughter. In peace and caring.

nempark
Posts: 589
Joined: Apr 2010

First of all please tell your lovely daughter to stop worrying about missing work. My daughter was in pain for a long time and all she worried about was missing work and the truth is they feel bad for you at work when you get sick but after a while they really don't care. My daughter worried how she was going to take care of bills, well she is still paying her bills even though she is out of work. I remember her telling me when she was leaving work early one day to go to the Doctor for adjustments for her back, her lovely boss told her that he didn't think that this will work out much longer.
When your daughter gets the result of the scan I will tell you in detail about my daughter's illness she is 46 single, no boyfriend and no children (thank God).
Right now your daughter is doing the right thing. The Ablation she had was just a few weeks ago and maybe and hopefully, she over exhausted herself causing the cramps.
Oh Boy!!! Do we know what the waiting game is like.I pray to God that this will soon pass and she will start to enjoy good health. You too Susanne do your best to think positive and (I know it is not easy)try not to worry too much. Please keep us informed. Be well my friend. Love June

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

Daughter ended up in ER last night because she stared bleeding. They did a CT scan. Kidney stone. Don't know what that has to do with any vaginal bleeding, but at least this isn't a result of the ablation gone wrong.

Thank you for your support. I'll talk to her this morning and see how the night went and get more details. You never stop being a mom.

Suzanne

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Whooooo so happy it's a kidney stone. Never would have thought as you said, be related to vaginal bleeding, as to more reasoning why difficult to diagnose.

Once a mother always a mother is my motto! Whether they're 6 or 36 yrs we still worry...I do with my daughter at 20 yrs.

Best to you and your daughter....
Jan

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

"They" say the kidney stone is not what's causing the pain. It's teeny and still in the kidney and may never come out and as long as it stays there, there should be no pain. They're thinking it is still pain from the ablation and that maybe she did too much (has been exercising like a maniac). Since they did a CT scan, you know they looked at everything and there is nothing to explain it.

Back to worrying.

Suzanne

nempark
Posts: 589
Joined: Apr 2010

My daughter went to ER with stomach pain and they did a CT Scan and ER docs told me that there were no grounds for my daughter to be admitted because they saw nothing on the CT, fortunately my sister-in-law was there and she asked my daughter if she think she should stay in and get further checks or would she like to go home. My daughter's response was "I feel too sick to go home and I don't want to go home and have to come back" so my sister-in-law told the Docs that she is not going home she is staying and that they should run some more tests.I was ready to take my daughter home because I thought she had a CT what could they have missed. She did stay in and spent a few days----OF COURSE THEY FOUND OUT WHAT THE PROBLEM WAS. Not to scare you, but I would like you to continue pursuing the reason why your daughter is having this problem. I will let you know what the problem is when you are assured that your daughter is okay. Do not waste too much time, make sure she gets a complete blood work-up. I think it is called CBC. LOL to you both and I really do hope this is just over fatigue, at the same time its better to be safe than sorry. June

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

I think this situation is just crazy! She should be getting better, not worse. She's currently in bed, on oxycodone, and still feeling crampy and sick. She has also been taking Ibuprofen, so not be running a fever may be because of Ibuprofen. There is a reason she's in pain, she should be healed from a normal ablation! I know her stress is adding to the whole situation, but she's stressing for a reason, doggone it!

I called her husband and let him know I'm really worried (nothing like an interfering MIL). He's a good guy, but we all know men don't get involved much about girl parts beyond the vagina. Anyway, he's trying to remain positive, but will call gyn tomorrow if nothing's better, and be the man in charge. I also emailed the NP in my gyn/oncs office asking for a referral in Las Vegas (that's where my daughter lives, not exactly the epicenter of world reknown medical care). I may or may not hear back from her, but I'm looking for who might know someone she should see. I had my daughter's permission to do this. She typically works in gynecology, but has been pulled in to gyn/onc because of a shortage of physicians. She will know about ablations (I sure don't).

June, she had a CBC,a urinalysis and a CT scan. I do think, they've done what they're supposed to up to now, but things still aren't better. Does anyone know anything about ablations and complications? I'm beside myself 600 miles away but know if I were there I'd only be in the way and add another layer of things for them to worry about. On the other hand, I may hop in the car tomorrow with the dog and my husband and stay not with them - just to be there.

And yes, Deborah, whoever wrote "I Enjoy Being a Girl" was definitely a man!
S

nempark
Posts: 589
Joined: Apr 2010

Okay, I feel better. Then she probably hurt herself by over exercising. By the way, you will not be in her way, she probably would be delighted, both her and her hubby. Just go. I pray that you guys get quick answers and closure. June

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

for both you and your daughter. I hope docs get to the bottom of this soon. I also think that being a "squeaky wheel" is in order here. It's too easy for docs to dismiss things.

Hugs and prayers, Mary Ann

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

She finally saw another gyn in same practice who actually examined her (no one else did) and dilated her cervix (ouch). The theory was that there might be some trapped blood that was not able to pass. That relieved a lot, but not 100%. She has an appointment for an ultrasound Tuesday. Things are definitely better.

In the meantime, I got a recommendation from my gyn oncology group for a gyn for future care for her. I hope she will look into that. My research into the one who did her surgery was very disappointing - not board certified, just out of residency and a graduate of a Caribbean medical school. Doesn't mean he's not smart, but it doesn't mean he is, either.

thanks for the support. I think she'll eventually end up with a hysterectomy, and she's ok with that.

Suzanne

debrajo's picture
debrajo
Posts: 743
Joined: Sep 2011

Poor kid! How old is she? I have been trying to get my daughter-of-the-heart to get a hysterectomy, without success. She has stage 4 "pre-cancer" of the cervix. It is a genetic thing with the women in her family. Dr. has been doing freeze treatments and it keeps comming back. I just want her to do something before the "pre" turns into the real thing! Best wishes for your daughter and you. Best, debrajo

marieinlv
Posts: 39
Joined: Aug 2011

I know what it feels like to be at your wits end! Great Drs are hard to find. I had surgery with an Oncology OBGYN, i stayed with her for awhile, the surgery went great. Later I found another that worked better for me. Dr Camille Faulkner, she is calm, soothing, takes her time, was referred by another ONC OBGYN. I'm very pleased with her. The office is in the Galleria Mall area. We all have our preference, but for me, I can't say enough obout the office staff(AWESOME) or my Dr. I will be thinking of your Daughter untill we hear, she's allright. Marie

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

thanks so much for the recommendation, Marie. She doesn't need a gyn oncologist (thank God!) but it's still good to know about Dr. Falkner and that might be another place to call for a recommendation for a gyn. My daughter is 39 (almost 40, but it's hard to acknowledge that my youngest is almost 40!) and she does live in Henderson.

Maybe she simply overdid the exercise thing after her ablation. She felt wonderful and had no restrictions and was told to do whatever she felt like, so she exercised.

I feel pretty comfortable that she's going to be ok now, but it sure was a helpless feeling from here because whatever was going on for whatever reason was really awful. I bet the ultrasound on Tuesday will be fine and she can move on. It will be interesting to see if this pain is cyclic because if it is, all the ablation did was relieve the bleeding and that's only half of the problem with her. And that will mean she'll need a hysterectomy which of course, I'm just fine with because then I don't have to worry about it just sitting and festering and getting cancer 20 years down the road!

Thanks everyone.
Suzanne

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

How is your daughter?
Did the new doctor confirmed the original suspicion (blood that needed to come out)?
Did she have the ultrasound?

I hop everething is well!

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

Sorry I didn't update everyone. All of my daughter's tests, exams were fine. The ultrasound did show some "fluid" in her uterus - whatever that means. She also has some ovarian cysts (old ones gone). Apparently sometimes ablations make things worse. Well . . . really?

Anyway, the decision has been made for a hysterectomy and she will be scheduled in about 8 weeks. I think this is a good direction for her. She's 39 and doc wants to leave her ovaries. I'm not sure how I feel about that given my history of breast cancer. I know we don't have to worry about her having uterine cancer with no uterus, but I worry about keeping her ovaries and developing ovarian cancer or taking the ovaries and artifically managing her hormone levels and increasing the risk of breast cancer. Probably, the route she's taking is the safest. I will just worry regardless.

Thank you for your concern and help.

Suzanne

debrajo's picture
debrajo
Posts: 743
Joined: Sep 2011

Isn't it possible to take out just one ovary and tube? That cuts the ovc, tube cancer in half. My sister-in-law had this done at her hysterectomy and it has worked out great. The one ovary provides all the hormones she needs with half the chance for ovc. Just a thought, best debrajo

HellieC
Posts: 431
Joined: Nov 2010

I'm so pleased your daughter's tests and exams were fine, Suzanne. It's a difficult call about whether or not to take the ovaries. I was 43 when I had my hyst and my consultant advised me to lose them - for the reasons your mention - and because he said the even if you leave them, a fair percentage will fail over the coming five years (not through cancer - they just stop working). I went on to manage my early menopause with hormones (and look where that got me - it probably "fed" those cancer cells which doing such a good job of hiding that they weren't found!). However, there is no history of breast cancer in my family. As you say, the route she is taking is probably the best given your family history.
I know there's no point in telling you not to worry - you're a Mum - it goes with the territory! But I hope all goes well for your daughter.
Kindest wishes
Helen

Ruffy7
Posts: 126
Joined: Sep 2011

This is so true! My right ovary was removed in April this year and menopause kicked in with a vengeance ever since - still trying to get hormones balanced! Grrr.... my left ovary is lazy - never seemed as active as right. Oh well, this all started when I was 51 so menopause was due anyway. Hope your daughter doesn't have to deal with it yet at her age and her ovaries keep working. It is so much harder when our kids are hurting!

April
Posts: 34
Joined: Jul 2012

Will you be going ou to be with her during her recovery

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

My poor darling continues to have pain, I continue to receive tearful and emotional phone calls, she misses work some days, and still no hysterectomy date or insurance approval. Thursday she had an appointment with her "old" gyn only to learn she hadn't done her homework and needed to change insurance coverage in order to see him (you know how these things work). Somehow she was able to do that and she felt so good after seeing him. He concurred that there's nothing really wrong with her except "post ablation syndrome", but can do her hysterectomy on the 24th (next Friday). She was elated.

Then she learned that her change in insurance was to a PPO and yep, you guessed, it - huge out of pocket expense. So she paniced again and Friday she cancelled the surgery for financial reasons. She apparently can change back to her original HMO within 30 days or some such thing and will stay with gyn group who did her ablation. But she still cannot get scheduled for hysterectomy at least until October if she stays with the HMO/first gyn group. I don't know why. This whole thing is just making me flippin' crazy! So she called old gyn office back to say please don't cancel my surgery on the 24th, but the office closed at noon. She's hoping they didn't have time to cancel it yet.

So - what I think is happening is that she will have the surgery on the 24th with the gynecologist she's most comfortable with and she will stay with the PPO and pay a lot of money. If nothing changes (and it might), I will go to Las Vegas on the 26th to help herd grandkids for a week while she recovers. The surgery will be done laparoscopically so her "down time" will be pretty minimal I hope.

And - 3 different gyns want her to keep her ovaries so she will.

Stay tuned, this all can change tomorrow. Will someone please fix our health care in this country so people don't have to deal with all this emotional/financial crap in addition to medical issues?

Suzanne

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

You both remain in my prayers. Look at the positive, you will get to spend time with the grand kids. I hope the surgery goes well. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

By this time tomorrow evening, Jyl will be on the road to recovery. Her surgery is at 1:00 tomorrow. I'll fly in on Sunday and stay at least a week. Please send a few prayers my way that the surgery goes well and resolves all the symptoms she's been having.

Suzanne

lovemycat
Posts: 43
Joined: Aug 2012

Hi Suzanne,
Sending prayers for you and your daughter. Having five children I know how worried you are.
Please know you and her are in our thoughts and prayers,
Helen

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

Praying that all goes well with your daughter's surgery and that she will begin to feel better. Wishing you safe travel, and that you too will begin to feel better. We Mothers are such worriers and wish we could fix everything. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hope all went well with surgery and your travel. Prayers for a speedy recovery.

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

she is having an incredible amount of pain, and she says morphine isn't helping. WTH? In an attempt to help her be less frightened, I told her about my own hysterectomy experience which was honestly a piece of cake. I left the hospital on NO pain meds the day after surgery. I had DaVinci, but she had laparoscopic so the outcome should be similar if not identical, shouldn't it? I do remember my surgeon telling me that not everyone has such an easy time as I did and many women do have a lot of pain, but . . .

Did anyone else have severe pain after laparoscopic hysterectomy? Her uterus was removed vaginally.

And, yes, I'm beside myself worrying.

Suzanne

Ro10's picture
Ro10
Posts: 1388
Joined: Jan 2009

A lot of people have shoulder pain from the gas they use to expand the abdomen to do the laparoscopic surgery. Walking is the best thing she can do to move that gas around. Pain medicine does not seem to help. Many people fear they are having a heart attack because of the severe pain, but is just from the gas.

I too had the Da Vinci surgery and had no pain. I hope you and your daughter are both feeling better soon. In peace and caring.

lovemycat
Posts: 43
Joined: Aug 2012

So sorry to hear that your Daughter is in such pain. I pray the the pain will go away and she can be safely home and resting. As a Mother I know you are so worried about her. Please keep us posted.
Helen

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

I've been here since Sunday afternoon and everything seems to be going well. She probably did too much yesterday, so has been down today, but we both think this is all part of the healing. Whew.

In the meantime, I'm having fun with the grandkids and cooking and cleaning (you know just like at home, but with grandkids added).

Thanks for all your support. I believe we're on the road to recovery.

Suzanne

lovemycat
Posts: 43
Joined: Aug 2012

Hi Suzanne,
Hope your Daughter is doing better. I know you are having a great time with the Grandkids.
I have 12 and it is a fund time and a little hectic. Wouldn't trade the time with them for anything. Take care of yourself also. Will be thinking about you and your family.
Helen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Glad you are there to help and support your daughter. It sounds like things are going better and hope they continue on this path.

I'm sure just having you there is the best medicine!!

Hugs to both of you, Mary Ann

marieinlv
Posts: 39
Joined: Aug 2011

Suzanne, If I can be any help at all, please don't hesitate to call. I'm across town in the NW side, however I'm a driver, so don't mind. Retired, so I'm able. I have grown kids that are still MY BABIES too. I Pray your Little Girl is fealing like herself again. Funny balance of take it easy and doing nothing. I'm so glad for everyone that you're able to come out to help. I'll make sure my ph# is on my info. Hope you enjoy our weather, and have fun with the whole family. Marie

Double Whammy's picture
Double Whammy
Posts: 2272
Joined: Jun 2010

Thank you all for your support. I'm flying home at 11:50. Oh, home sweet home. Jyl is definitely on the road to recovery and is certain the hysterectomy "fixed" her pain issues. I stayed 4 days longer because she needed me a bit longer and my son developed a kidney stone and we had him in the ER Friday. What's with these kids and their kidney stones?

Marie, I just saw your post. Thanks for the offer. I was probably in your neck of the woods yesterday with my son who could only see a doc to follow up yesterday at some remote location. Thought we were going to end up in Utah! Next time I'm here, I'll try and look you up and maybe we can meet.

Suzanne

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