I am in the exact same situation. It took a long time to figure out what was wrong with me. I had a cone biopsy about 4 years ago and they just now realized in february that my cervix was closed and very very weak. I had surgery and it also closed shut again three months later. I went to the Dr. twice this summer to have my cervix dilated and it didn't work. I have to have surgery again, but my doc said that my cervix can only handle about 2 more surgeries if i want to have kids. I'm only 26 so I have a lot to think about.
You should see a fertility specialist. Even if you do not want to get pregnant, they have the most experience with this problem. My specialist has been wonderful.
Hey There-I had a cone biopsy 10 years ago the DR. who preformed the procedure recently up and left all his patients.My new Dr. when doing a pap was having a hard time reaching there to get cells to send to the lab.I just went back for a second pap in the last 3 months and she dialated me and still was having a time of it.She said the cervix is scarred and if this go at it does not get any cells then we will try it when I am having my monthly.If that does not work then we will try another road.I am shocked that all the while I thought the DR. was doing a complete pap he was never getting cells from my cervix.Thats for 10 years now.My question here has anyone run into this problem after a cone biopsy??? Thanks
Last year I had two colposcopys and this year, two cone procedures. The specialist that did the second cold knife procedure missed that I had developed scarring and my cervix healed almost completely shut. I ended up at the ER due to the pain from my menstrual cycle. (NOTE: Pain during my cycles (including minor cramping) had never been a factor before). Anyway, I then went back to my regular OB/GYN. (The specialist was not helping with the pain. He just said, in his 19yrs of experience, every woman was different. Great NON answer as to why I was having pain that wasn't there before). When my normal OB/GYN examined me, she couldn't get a rod like tool that was about 1mm in diameter through the opening without high resistance and my screaming “please stop”. So, I am going through cervical dilation now. Toradal (helps stop uterine contractions) and Percocet help with the highly uncomfortable (lower pain level for me) sensasation during the dilation, and afterwards. My Dr is using a thin catheder (maybe 2 mm in diameter) to help keep the opening open between dilations and help make sure the menstrual blood drains. (NOTE: making sure your uterus can drain properly is very important. If left unchecked, it could cause infection or lead to developing endodemetriosis. sp? - see google for medical articles and talk with your attending Dr.). I've been told (and read) usually 5-6 dilation sessions are needed. I'm hopeful because I did the third one today, and even though I have slight curves to the "cervical channel" which makes this a little more difficult, she was able to pass a guide for the catheter through with very little resistance (from the slight curves) that was at least 4mm diameter. She has been working with the ultrasound tech during my procedure to make sure she doesn't puncture the cervix and or uterus in her efforts.
I had a cone biopsy and a leep incision when I was 19. I had half of my cervix removed. 23 months later I had severe pains in my stomach. Further investigation found I had fluid in my uterus. I was booked into have a D&C. On waking up from the surgery I was told that the surgery (D&C) had not been preformed as I had no cervix. The surgeon who preformed my leep incision had removed so much of my cervix that my cervix had closed up. The fluid in my uterus was my monthly menstral cycle. I had been bleeding into my uterus for over 23 months. I was previously told my reason for having no periods was because I had been on the depo injection and it could take a long time for it to come out of my system. I was given the contraceptive pill and told to take it and hopefully it will create a false period and over time expell all the fluid in my uterus. It did work after about 6 months. I still have stenosis of the cervix, I had to have fertility drugs to concieve my little girl (I had previously lost 2 pregnancies) It was a constant worry throughout my pregnancy if I could give birth or if my cervix would hold out. I am now 30. My daughter is nearly 2. I had her naturally and without complications. Ladies my advise to you would be to question everything. Dont for one minute let the doctors have the power they are not God. They do make mistakes. You are entitled to another opinion, you can change your doctor or consultant anytime. Write down all the questions you want to ask dont be afraid to get your list out. We all know through our nerves and stress our minds go blank. If need be take someone in with you. I had a terrible time over the years but I got there and so can you. Dont give up those of you who are worried about concieving it will happen. I know! Lisa. x
This all sounds so familar to me. I have two children 11 and 8. I am 29 years old. I have been having problems for several years now all after having my cervix froze I believe. My doctor is not giving me the answers that I need and I am finding out that he is also not telling me everything. I started depo 7 years ago and have not had a period since. After the abnormal pap 2 years ago and freezing of the cervix. My cervix closed and I had to go in and have it dilated.and reopened. He said nothing about there being any complications after that. I decided to come off the depo thinking that the closure was because I had not had a period in so long I was also having problems with my horomones being out of wack. I had also had a couple ovarain cyst. I started the Mirena IUD a year ago and have had nothing but problems since. Constain pain. I had a chocolate cyst that the doctors were watching for 6 months. I started having pain during intercourse and at random times. I had the IUD removed and bleed off and on for two week. I went in for a follow up ultrasound last week and the cyst was gone. But now he says I have fluid in my uterus and I am full of calcifications. I ahve pain in my abdomen. lower back and feel bloated. They want to do a DNC next week but I scared that this is only a temp fix. I am worried that he will find more problems or something serious once he goes in. They think they might find an infection once they fo in. They saif they dont know if the fluid is mucus, blood, or what. They suggested they I go ahead and tie my tubes while I am there which I was not quite ready for and if there is an infection couldnt that cause more problems. If anyone can help me I apprecite it thanks.
It is so nice to hear all of this and know I am not alone. I was just today diagnosed with stenosis of the cervix. I had a cone biopsy 7 months ago and the fluid has built up so heavily in my uterus that its backed up into my ovaries and caused endemitriosis. I am scheduled for surgery in a few weeks and hope that it will give some relief to the pain I've been experiencing every month. The doctors all said I had Pelvic Inflammatory Disease because of the severe pelvic pain and even though I questioned them I didn't get any answers until I saw the right gynecologist. To others that are newly diagnosed, good luck.
I recently had a saline sonogram done. The HSG was ordered first but that doctor couldn't not access my cervix because it was too "hard". The doctor that performed the saline sonogram had a very hard time. He said when he first looked at my cervix that the opening was equal to a pinhead and that he was going to have to work at it. And BOY did he ever work at it. I was in a great deal of pain... and just as he began to talk about sending me to the hospital to have it done POP... he made way. He was able to insert the catherer after all that. My question is will my cervix remain open or will it close again? I believe it got that way after having my cervix frozen twice due to an abnormal pap.
Nice to read up about others who have had this. I had a LLETZ done in March 07 and when my periods became continuous and the pain unbearable my gyno told me "That is normal as you get older". Eventually I started having horrid symtoms and went to my GP. He immediately shipped me off to get an ultrasound and I had a nearly closed cervix and I had a haemometra in my womb that had been forming nearly two years since the operation. Last October I had a hysteroscopy, the blood removed and a catheter for a day. This didn't work and I totally stenosed and just before Christmas and over Jan/Feb I had 3 lots of dilation. For 5 weeks this looked good, but as soon as I tried to have a period, nothing. So this friday I am in again for another hysteroscopy and removal of blood, and they will then leave the catheter in until Sunday. I worry, as online research of catheter stent for use with stenosis shows that you need at least two weeks for it to work, so wonder if I'm wasting my time. I questioned my doctor about it previously, and he said what is the point of doing too much when less works, but I'm not sure less is better in this case :( I will take in the documentation with me and ask him about it, but do wonder if at 27, I will ever have a normal period again, or the ability to have children...
OMG im so glad I'm not alone..I had severe dysplasia and had a cone biopsy that removed a large section of my cervix (sept 08). I'm going back in today for my 5th dilation since (Jan 09). . My doctor tells me, my cervix is mutilated and this will be something I will have to continue doing... after much discussion we have agreed for me to have a partial hysterectomy, since I all ready have 2 children and have my tubes tied. The pain I have been going through each month is almost unbearable and with my tubes being tied my menstrual cycle just sits there til i get dilated again... I cant wait till my surgery because this is not something I can live with! I hope you all find an answer that works for you! xoxo
I myself have stenosis and have had it since I was 19, I am now 33. Never heard of dilation. I have however had my cervix lasered twice. Had my son in 2002. Cervix closed, lasered in 2003. Had a stillborn birth in 2007, lasered in feb. 2008, had my daughter in Dec. 2008 now need it done again. Had my tubes tied after her so won't be having anymore babies unfortunatley. However I also had 7 pregnancies in total 4 miscarriages, 3 babies. After every pregnancy my cervix would close and I would have it lasered. This should be the last time I get it done because I am not having anymore children, therefore my cervix has no reason to close. All my children were C-sections because my cervix would not dilate. Sometimes I think I should have just had a hysterectomey! Anyways I don't know where any of you ladies are from, but I live in Canada and have never heard of dilation and I have been dealing with stenosis for 14 years. Talk to your doctors about having your cervix lasered it worked for me.
hi i couldnt deliver my baby boy naturally last december because my cervix was scarred adn i wouldnt dilate. we believe it was scarred from the cervical suture i had put in in august last year to stop my son coming early like my daughter did. my drs havent mentioned ths condition to me but i think this sounds like wat it is. i am currently pregnant with #3 so will have to wait and see wat they say.
Hi everyone, I went in for a endometrial oblation in may 2008 and it worked as far as i was concerned. In August i started feeling and being sick aswell as fatigue, by Christmas i was having severe pain in my sides and top of the legs plus i started lightly bleeding and spotiing. Now We're in September and in the last four weeks i have had maybe 5 days were i was feeling normal. They said i had multiple ovarian cysts, when i questioned about all the symptoms i was told to go in for a endometrial biopsy, OMG i have never before had pain like it!!!! The doctor found that my cervix was closed and didn't know why, we figure it's from the oblation so i now have to be put to sleep for a DNC. I have asked for a hysterectomy as i am forty yrs old, had a tubal and don't need any of it anymore.
i gave birth to my first child in april 08, had postpartem hemm 2 weeks later and a D&C to remove retained placenta. When my daughter was about 8 months old started getting strong abdominal pains, doctor said maybe body trying to ovulate so i let it go until july 09 when i could no longer handle pain. Ultrasound showed i had cervical stenosis and my monthly flow was unable to escape( i breastfeed until about may so just assumed my period would not return until i had stopped) Had surgury in august and have been getting my period regular since but unsuccessful at conceiving for the last six months.
Not sure if i should be worried yet?
don't think this has caused endometreis for me but not sure if there could be other issues there caused by cervical stenosis?
Anyone been in this situation?
I had a cone biopsy, about four years ago. About 2 and a half years ago, out of the blue I had the most painful period pain you could imagine. For several hours I was layed out on the floor with pain. Painkillers didnt even touch it. The only thing that stopped me from going to the ER was that I felt too sick to get there. It makes me so angry when you google 'period pain', and there are suggestions to 'get a hot water bottle' or ' take some exercise'. I am talking layed out on the floor, vomiting, and unable to move for cramps, a type of period pain like no other. Nots something a hot water bottle is going to cure!! Any way, I have been going for regular colposcopy exams, and the nurse who undertakes these says that she thinks my problem is cervical stenosis. I have episodes of pain like this, have been to see her, she has tried to widen the cervix openning, which usually results in a few months with no symptons. However, I was dialated in Jan this year , had a normal period in January, but then seemed to miss my period in February. However, end Feb I had major problems again with perhaps the worse symptoms I have ever had. I always seen to follow a similar pattern. My period starts and I might have a couple of hours of light bleeding (often the period itself is very late) then, I stop bleeding and this is followed by five or six hours of horrendous cramps, but with no bleeding at all. Eventually the sever cramps subside, but I have a few more hours of feelings extremely uncomfortable and bloated, like I have a full bladder (but I havent). Eventually, the discomfort goes, and I start to bleed. Usually the period itself is fairly light and short lived.
I went to see my nurse again today. She described that the opening to my cervix was 'pin hole' size. So once again she dialated me, and my period seemed to start again instantly. She has said if it keeps happening I will need to come in for surgery. My GP has been absolutely useless with this. After this last bout of severe pain I rang him, and he said that if it happened again he would 'think about" referring me. If he got a pain in his testicles so severe that he could not stand, I wonder how long he would 'think about' getting specialist help!. I guess my point is this, if you experience this kind of problem, dont be fobbed off by the GP - insist on seeing a specialist, insist on getting help. It is not normal to be collapsed on the floor with period pain, and dont let anyone try to tell you that it is. I would really like to hear other peoples experiences of stenosis, it has been good to read the accounts above and know that I am not the only person going through this.
So I just finished reading this post and I can really relate. For the past 3 months on the first day of my period I bleed and have mild cramps. Then in the evening, always around 6pm, I get hit with crazy debilitating pain. This time I had taken 4 advil at 4pm and still had horrific pain. Usually I end up taking 4 advil and 2 vicodin every 4 hours just to take the edge off. Not to be too graphic, but urinating or putting a tampon in or out made it 10x worse. I also get chills and nausea. The bad pain usually last through the night and I have less pain and nausea about another 24 hours. This time I went and saw my fertility specialist (he helped me get pregnant with my now 2 yr old twins) while I was having pain. He did an internal US which showed that my uterus was fine and emptying. The US itself was excruciating, esp every time he touched my cervix. He said it is either my cerix or endometriosis. I have an apt next week for saline hystogram so he can measure my cervix. He made it seem that if it was my cervix, they would just have to dilate once and all would be fine. But from reading all of the experiences with dilation, it doesn't seem quite so easy or permanent. if its not my cervix, then I have to have laproscopic done to check for endometriosis.
I did have a colposcopy and biopsy about 15 yrs ago. i also had a c-section for my twins. It is just so weird that it all came on so suddenly????
Hello everyone, I just wanted to tell you my story. In September 2007 I fell pregnant with my 2nd child and unfortunately on the 10th December 2007 I miscarried at 13 weeks. We ended up doing a D&C and I waited for my period to present so I would be able to try for another baby. My Gyno told me that it should present within a month.... Two months went by and still no period but I started getting severe abdominal pain, which progressively got worse over a matter of weeks, to the point where I took myself to the hospital from work. The doctors at the hospital were useless and kept me there for 6 hours and did a number of tests all to no avail. They sent me home with pain killers and wanting me to get an ultrasound the following morning and contact my Gyno. I rang my Gyno on the way to the ultrasound and he told me that he believed he knew what it was and that it is a rare condition where my cervix had closed up after the D&C and the blood from my period was building up in my uterus which was causing the pain. I went for the ultrasound and then went to the Gyno who confirmed it. I ended up back in hospital and the Gyno had to put an IUD in for 3 months to help keep my Cervix open. After that I have not had any issues and thankfully have been able to have another child.....
I have had an ablation and now my cervix cannot be entered with even a 2 mm dilator!! I have severe pain,cramping and spasms evry month, HUGE clots that hurt like heck coming out and retaining of fluids. help!!! would a LEEPbe beneficial for me?? I am so sick of this crap every month!! had this for four yrs now.
I started to have severe periods around xmas last year and in march had hig blood pressure spikes. I have been to outpatients several times and to my family dr several times, all they agreed on is that hormones may be causing this issue. i recently was referred to a gynocologist and she told me that my cervix is severely scarred shut. I have had dialation done which didn't work and now they want me to have surgery. I am 50 years old and not looking to have children and i am very confused about what to do. Everytime my cycle is about to start my blood pressure goes up and i am in a panic and my doctor and anyone at out-patients just poo-poo me. Am I crazy? I will take any advice I can get
I recently had a hysteroscopy/d&c for cervical stenosis. i havent had a period for over a year. I was pregnant last year and had a miscarriage. After 2 d&c to remove tissues from pregnancy. I never got a period. It took them a long time to diagnose stenosis! Sheesh!
Now Its been almost 2 weeks since surgery. the Dr put in a catheter in my cervix to keep it from closing up again. I go back in a few days to have it removed. Basically i was having monthly pain each month and no periods or spotting at all for over a year. It puzzles me, how long it took for htem to consider the possibility of cervical stenosis. Im baffled. However, they said the surgery went well and fingers crossed, cervix will stay open.
Okay, this thread is very disturbing...
Are you aware that women are not even tested before age 25 or even 30 in some countries? Why? Because the evidence is that screening does not change the tiny death rate in women under 25 (or even 30) BUT, testing produces very high numbers of false positives and leads to harmful over-treatment. Almost all referrals are false positives - this test is intrinsically unreliable and the cancer is rare, that's a bad combination. An abnormal test means cancer or a real problem in less than 1% of cases. (and the risk in a woman under 25 is near zero)
I strongly suspect most of you have had unnecessary procedures - testing a 19 year old woman is unethical - she has a VERY high risk of a false positive (1 in 3), but cancer in this age group is vanishingly rare.
Finland has the lowest rates of cervical cancer in the world and they offer just 5 to 7 tests over your lifetime - 5 yearly from age 30. They still sends 35%-55% of women for colposcopy and usually some sort of biopsy in their lifetime, but that's the best you'll do with this test. (that's a lot better than the States though where 95% of women are referred)
Note: lifetime risk of cervical cancer is 0.65% in Australia (maybe a little higher in the States but no more than 1%) - 0.45% benefit from testing (0.65% in the States), 0.20% (0.35% in the States) get false negatives and the rest derive no benefit, but 77%-78% will be referred...95% in the States...
This testing causes major over-detection and over-treatment. You can minimize the risks by examining your risk profile and if you choose to test, adopt a schedule that gives you some protection from false positives - like the Finnish program.
As a low risk woman, I made an informed decision not to screen more than 25 years ago. I'm not interested in an unreliable test that causes major over-treatment for a rare cancer - and especially when my risk is near zero.
I suggest you seek legal advice - you should have been warned about the high risks of early testing for no benefit and any abnormal result should have been managed VERY conservatively....this degree of damage to your bodies should NOT have occurred.
I had a LEEP procedure done about 5 years ago, and like many people here I was on Depo for a while. I came off Depo and after a couple years started getting really bad pain every month even though I never got cramps before, and I wasn't getting any bleeding. My doctor knows I have a stenotic cervix from the procedure, and I asked if it could be a problem that I couldn't have my period and was told it was normal. I ended up in the ER monday since my doctor wouldn't see me (they could fit me in in a couple of months) and I couldn't take the pain anymore. The ER doctor did an ultrasound and found that my uterus was swollen and misshappen. I went in for surgery and had my cervix dilated and my uterus drained. I was told that I should expect some bleeding but nothing too heavy. All I've gotten is a very little spotting. I don't know if that's because they drained everything out during the surgery, or if my cervix shut itself again. Does anyone know if thats normal? I go back for my pot op appt in a couple of weeks, but I kinda want to know what to expect. I don't want to got through that pain again!
I think I might be older than the rest of you. I had an abnormal pap while pregnant with my daughter in 1988. I had cryo surgery that did not work and was then lasered. My paps where normal but I did need to have a uterine oblation in 1995 for uterine polyps. I have once again had an abnormal pap and went for a LEEP procedure. During this procedure the Doctor told me my cervix was stenosed and she had to dialate me in order to do the procedure correctly. I thought my light periods were due to the oblation. The only thing the doctor has suggested to me was Estrogen suppositories (just a note i am not menopausal) which I have never heard of. I still recvoering from the LEEP so I have not yet tried the suppositories. I will let you know if they work!
I am in a similar situation, i have to have a d&c next month for stenosed cervix, but my main problem is rectal pain and pressure, i dont get uterine pain, just the rectal pain and its could happen throughout the whole month a break every now and then,. its starting to really bother now as i feel its radiating down my legs, has anyone else got the same symptoms. im very worried at this stage im only 32 and have had two letz and now this!!
I'm in the same boat as some of you. I had Cryrosurgery done this September and my period in October was extremely painful and VERY clotty. Now it is January of 2012 and I have not got another period and had HORRID pains both months my period didn't come...and I'm on the pill so I knew something was wrong. Went back to the gyno and I have a completely stenotic cervix, which they claim is highly unusual for this procedure. Two drs tried to break the scar tissue and were not successful. It is weird because they had dialated me in the beginning of Oct. and said my os was open. I left with estrogen cream that is suppose to soften my cervix, and a prescription for cytotec which I need to take a day before I go back in and they attempt to dialate me. I just turned 25 last mth and this is so depressing. I had mild/moderate dysplasia and now I'am so scared I will not be able to have children or get endometriosis from this crap if it re-closes. My doctor is not compassionate at all. Has anyone had this resolve after surgery?