Gyn question
OK so next week I am getting surgery- two for the price of one so to speak-anoscopy to check for cancer recurrence ( GI surgeon) and then the gyn is going to dig around to try and retrieve the IUD that got scarred in and lost. I am really dreading the gyn procedure. I feel like I'm going to get torn up inside and they still won't be able to find it. Has anyone had anything like this? I kind of feel like backing out but it was a lot of trouble to set up both doctors at once. I think the vaginal stenosis of all the side effects of radiation bothers me the most, I feel so damaged. The GI symptoms are bothersome but I still feel like "me" with them- I don't feel like me with a ruined vagina.
A question for the old timers: does the stenosis ever stop progressing? I can't stand the thought of dilators, I just use either my finger or a tampon a couple times a week to try and keep things "open". Do I have to keep doing this indefinitely?
Comments
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Upcoming surgery
MM,
I'm not an "Old-timer" as you know, and I don't have any experience in what you're facing. I just wanted to take a minute to wish you well as you prepare this surgery. I understand your trepidation. I'd feel the same. Have they been able to see the IUD with x-ray or untrasound? There must be some way to get a visual without just digging around for it. Are they doing the surgery strictly vaginally or laprascopically (sp) too?
I haven't attempted inserting anything vaginally myself, but I know what you mean about feeling like your vagina is ruined. Mine has been ruined since I had a hysterectomy about 15 years ago. I never took HRT, and it really made intercourse so painful, that eventually my husband and I just gave up. Actually...I don't think he's given up quite yet...he still has hope, but I don't, especially now, after undergoing radiation. I feel damaged too. But enough about me.
I hope that you don't back out of this. I don't think it's good that that IUD stays inside you...that's just my opinion. Tell your dr. your fears, if you haven't already, and see what she/he says. I hope they can put you at ease. Maybe someone else here can give you some good advice...I'm sorry I don't have any...only good thoughts for you and what you're facing.
Hugs,
W
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Surgery
Mm, I am not a old timer either and I don't have a IUD and I'm single but and had a hysterectomy many years ago I did take estrogen replacem but I don't know how much that helped but darn the radiation using a simple applicator for yeast infection cream is like using a baseball bat where only a pea shooter should go. I haven't used the dilator much either it's so painful just my finger but enough about me as welll too. It's also just my opinion that you let them take the IUD out but I understand your trepidation but maybe now is better than down the road when you might have a complication from it being there. I'm so sorry that the radiation oncologist didn't have you take it out. My best wishes, thought and prayers are with you as you go forward,
~~ Kim
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forever
as far as i know ...we have to keep using the dilator or perhaps intercourse does the same thing.... i am 8 years out and still use dialtor just not as often.... and yes, it hurts but not as much as first..... keep doing it and going up in size eventually.... yes,,, get the IUD out .... you do not want that inside forever..... hugs.....sephie
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Thanksthi
Thanks for your replies. Sephie, I was afraid that was the answer. Wis- they are going in vaginally, no laparoscope. And I'm going to call today to see if gyn wants to see my last CT to see if it shows up on that. And Kim- I had to smile at your description of the pea shooter/baseball bat comparison! For future reference if you get another yeast infection you can take oral diflucan instead of the topical stuff- I had a yeast infection recently and the pills were much better! Thanks for all your thoughts and prayers. I will update after surgery.
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Hi MM
Not cancer related but I had a friend get an IUD removed recently and all of the pain she was experiencing for the last year is gone. I would get it out ASAP.
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It's out!!
Well surgery is over, thank God for general anesthesia because I sure didn't want to be awake for it! I was in surgery for 2 hours. My cervix was so scarred they had to start dilating with an instrument only as big as a tear duct For eye surgery. They also did anoscopy and biopsy but GI surgeon did not think anything looked malignant. Thanks for all the support guys!
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Yippeee!!!Mollymaude said:It's out!!
Well surgery is over, thank God for general anesthesia because I sure didn't want to be awake for it! I was in surgery for 2 hours. My cervix was so scarred they had to start dilating with an instrument only as big as a tear duct For eye surgery. They also did anoscopy and biopsy but GI surgeon did not think anything looked malignant. Thanks for all the support guys!
MM,
I'm SO happy for you! How are you feeling? Besides relieved, I mean physically? Rest when you are tired. Surgery takes a lot out of you, so don't push yourself to do things you aren't ready for. Expect to tire easily for a while.
Please tell me that it wasn't the same GYN doing the surgery that advised you to just leave it in before treatment, was it? I'd never go back to that one, EVER. And I would send them the bill, with a note attached, explaining that thanks to their horrible advice, you had to go through a surgery that was totally unnecessary had they given you good advice and taken it out prior to treatment. It would have been so easy, right in the office! Maybe you'll get a response, maybe you won't, but at least they will know that their advice sucked, and hopefully, they will have learned something, so the next time they are faced with the same question from another patient, they will do the right thing and take it out! Especially when you consider that birth control will no longer be necessary after having radiation. (I also wouldn't hold my breath expecting them to pay the bill.)
Personally, I'd look into a lawsuit for negligence. But that's just me, feeling short tempered and even though I've never sued anyone, and I'm certainly not a lawyer, I think you might possibly have a case. It's worth looking into. Lawyers won't take a case unless they they believe they can win it. If I were in your position, I'd be SO pissed off at that doctor, I'd do it just to shake them up, since you can't physically grab them and shake sense into them. When you consider the fear, anguish, pain and expense involved in having that IUD scarred into you and needing the surgery, isn't that doctor responsible for that? Food for thought. LOL, I think I'm mad enough for the both of us that you had to go through this.
What did the doctor that did the anoscopy see that made them take a biopsy? I'm REALLY glad the surgeon didn't think anything looked malignant, but I'm curious about the necessity of a biopsy. When will you get the results?
Anyway, I'm glad this is behind you, and you can get on with healing...and your life!
Hugs!
~Wis
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Yea MM!!!
Its good to hear that the surgery is behind you and that they got the IUD out I'm with Wisteria in the mad department and I while have never sued anyone personally my son is a personal injury lawyer so I do think there are time people should and I too think that you have case that gyn really should have taken out your IUD. I'm glad for you that they did the anoscopy under sedation too I've been awake during mine and while I got through so far the trepidation I have when it's time fir them is huge so I understand you not wanting to be awake for it I'm aso happy that your doc doesn't think anything is there too. My thoughts and prayers con to be with you.
~~ Kim
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Thanks
Wis, I typed out a long response yesterday but for some reason everytime I tried to submit it, there was an error message. So abbreviated since I'm tired today, thanks for being mad on my behalf, no it was a different gyn, and I guess the surgeon did biopsy to be on safe side, he was new too since surgeon who scoped me last year moved away.
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Biopsy
Biopsies from the anoscopy were all ok!
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MollymaudeMollymaude said:Biopsy
Biopsies from the anoscopy were all ok!
Yay!!!!!!!!!!!!!!!!!! I am SO happy for you! May you heal quickly and put worry out of your mind! Hugs!
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Yay for good news!
I've been following this thread, though I'd chime in. I try to imagine having a IUD in place during radiation, and then it's stuck and they have to dig it out, and I just can't go further. Thank goodness they got it out! And hurray for good biopsy results! Now you just have to heal from all this. I'm thinking of you!
I have wanted to sue my GP who told me I was just getting older when I went to see him because I knew something was wrong. Then there's the GI doctor who missed the tumor when he did the first colonoscopy, but I love him, he's been the sweetest doctor all along. It is rare cancer, as people have pointed out, and they don't expect it. And, why don't ob gyn's do regular anal pap smears? They certainly should. If we'd known I had hpv in my anus we perhaps could have cought the cancer earlier. Sorry for the rant about me... Mollymaude, I'm so glad you are doing well and got the IUD out and no signs of cancer!!!!!
xo
Jane
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Jane
Thanks for your post. I appreciate all the support! I think all of us have run into doctors who seem not to listen or act dismissive. It's nice to vent here, and then move on to a better doctor!
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Vaginal Atrophy after radiation for anal cancer
Hi, I am 22 months post treatment for T1 Squamous Cell Anal Cancer. I had 28 radiation treatments, and Chemo on the 1st and last week. 5FU and Mytomycin. I see the medical Oncologist and have had CAT scans just about every 6 months and see a Colo-Rectal Dr for an exam of the former tumor site every 3 to 4 months. So far no signs of cancer. I have the same bowel issues that I have seen mentioned, with urgency being the most bothersome, but I can manage, Citrucel helps. I feel very fortunate that I did not have any more serious issues during and after treatments other than the usual pain from radiation, loss of appetitie, nausea et. I lost about 20 lbs. and have gained back about 5 of that, still do not have a very good appetite. I also can not eat certain foods now, especially some raw fruits and veggies, and fried foods.....love fried seafood in the summer.
My issue is vaginal atrophy. I am 11 years post menopausal, so I did have some dryness and uncomfortableness being itimate with my husband. I was not told before treatment about the effects to expect after. I started using the dialators, there was some minor bleeding and uncomfortablness at first. When I was comfortable inserting one of the larger ones, tried relations with my husband, only to experience excrutiating pain internally, that lasted for almost an hour. Needless to say I am hesitant to get to that point again. I have mentioned it to my PCP, and medical oncologist, but no one has any advice except keep trying the dialators. I finally went back to my former OB/GYN yesterday, he said I wasn't in as bad shape as it may feel to me and suggested I try Vaginal Estrogen Cream. I am extremely hesitant, for fear I would be risking another cancer. Has anyone tried this , were there positive results ?
I won't be seeing my medical oncologist for another 2 months, to ask him. I would love to have my intimate life back, but I am so much on the fence. I really would like to try the cream to see if it will work, so I kind of don't want to call the oncologist now in case he says no. I figure using it for 1 month may not do any damage...but who knows???
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I have read quite a few blogs
I have read quite a few blogs here where doctors have told their patients to have lots sex. Once everything healed, I said why not? I am four years post menopause so I had painful intercourse in the past. I use the dialator regularly with KY Jelly. And I keep everything moist down there. The first time we had sex it hurt like hell but no bleeding. It gets better each time so I am looking forward to the day when the sex is painless. I am also hesitant to use hormonal creams. KY Jelly seems to work well.
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Estrogen cream
First of all Thank You you all so much for your input on this issue I am having.
Jane: My OB/GYN said the same thing about hormone supported cancers and that anal cancer is not in that category.
I was thinking the same thing, using the cream for just 1 month may not have any detrimental effects, but may just get me over the hump, to be able to use the dilators, and or have intercourse more comfortably.
Ohmy: I am feeling so conflicted about using the cream, as you have expressed, but the lubricants alone burn, and keeping things moist with just otc lubricants doesn't give any relief from the pain of the dryness. Do you still use the dilators?
Wellzen: Are you using the estrogen cream ongoing? I was advised to use it for 1 month, and if it helps significantly, I may not have to use it again if I can comfortably have intercourse, or continue to use it intermittently. I will be thrilled if 1 month's use will get me to the point of being able to comfortably be intimate with my husband....even if I still am not totally back to normal.
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