Need to vent--wondering how long?

Here's my story: I'm 32 and a mother of an 11 yr old. For the past 10 yrs I haven't been to the doctor's because I was a stay-at-home mom with no insurance. I'm not married to my son's father so I can't get on his insurance. I finally got a part-time job so I could get insurance and went to the gyno for a check up. Test came back abnormal, turned out to be CIN III with HPV 16 strain. Had leep done and said they got it all. Came back in 4 months for my check up and said it was back at the same level. My doctor told me to go see an oncologist and get his advice on what to do since she told me it was very unusual for it to come back that fast at that level. Said that if it does return it usually takes a year or two. Went and saw the oncologist and recommended getting the leep done again and then come back in 4 months to see what happened and if it came back to talk about having a hysterodomy (?). Well I never made it for the leep because I ended up loosing my job and insurance and can't afford to pay for this out of pocket. Been looking for another job but not having any luck on getting any calls for interviews. Called family services to see if I could get medcaid help and since I live with my boyfriend (but not married) they would go off his income which is about $400 over there limit to qualify. Yet we are struggling to make it from pay check to pay check plus we have custody of his 11 yr old nephew that we take care of. So I'm wondering how long I have before this turns into cancer, if it hasn't already, and I'm just supposed to wait around to die because I can't get any help? Even if I get a job soon I still have to wait for the insurance to kick in and will it be too late by then, if it's not already like I said. Feel really lost and don't know what to do. Don't want to marry the boyfriend and end up putting him in debt over this or lose our house because of my medical problems. But I want to be able to live and be there for my son, that's my main concern right now. Will I be around for him or for how long. Really wondering how fast this is going to progress if it came back that fast in 4 months. Thanks for listening, just need to vent, feel like my clock is ticking.

Also I've been really tired lately. Never used to be able to lay down and nap but lately that's all I want to do. Anyone else feel like this?

By corellin
Posted September 23, 2009 at 5:35 pm
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hi valleyohgirl -- it's unlikely that it came back that fast and more likely that they didn't remove all the dysplasia to begin with. One thing that shouldn't cost money -- is that you should be able to get copies of your medical records and particularly read the pathology report post-LEEP. That way you can see what they found in the LEEP tissue -- for example, CIN3? and whether the lesion extended to the margins. If the lesion extended to the margins, then it would completely make sense that there was still some CIN3 at 4 months. Also, did the doctor do a colposcopy and biopsy at 4 months to confirm CIN3, or did the pap just come back HSIL? If the pap came back abnormal, but was not confirmed by colposcopy or biopsy, then it's possible that there was an abnormality due to healing. Either way, it's still possible for your body to clear the remaining dysplasia and clear the HPV infection on its own.

Maybe someone else has some ideas how to pay for a repeat procedure if needed? Also there are some really good posts on lifestyle changes people have made to give their body a better chance at clearing the dysplasia.

Good luck to you! I know it must be stressful dealing with this and especially given the strain to the finances.

By SurvivorJan
Posted September 24, 2009 at 1:20 am
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valleyohgirl - i would think there would be some kind of free clinics in your area. continue pressing the medicaid side emphasizing that you two are not married and he has no responsibility for your bills. you may want to go to a clinic that does a lot of medicaid and see if they can help you get a follow up.
Good luck to you

By LGW
Posted September 24, 2009 at 9:07 am
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Please go to your local health department. They can help you with getting colpo, paps, and surgery. There is an organization called Cervical Cancer and Breast Cancer Coalition. Here in Georgia were I live, if you are diagnosised with CIN111 or higher they will put you on Women's Medicaid to get treatment. There are ways to get help. I urge you to look into this as soon as possible. It seems something is very wrong and you really need help fast. Keep us informed and I will be praying for you.

By Emkaytx
Posted September 24, 2009 at 10:42 am
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Since you are living with boyfriend, can you re-apply for just you, are you listed as part custody of nephew? When I was denied medicaid for my kids (years ago) they told me I had two new cars and couldn't qualify. Medicaid office personel told me to leave off the vehicles and I got approved. I was on plan I had to pay monthly ($20) . I feared lying but she told me it was voluntary information. Thank God I didn't need it long, but it sure helped on one of my sons. Call them back and ask how you can get approved and that you really need this.

By Kate74
Posted September 24, 2009 at 10:57 am
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Hi Valleyohgirl,

I am really sorry to here your story. No one should have to feel like they do not know where to turn when it comes to their health. LGW is right there are programs in place to help you, I am disturbed by the fact that Family Services did not put you in the right direction.
I myself am in a similar circumstance (without health insurance) But I am in Michigan. However I did look into Ohio and if you google Ohio Department of Health Breast and Cervical cancer project it will bring you to the page you need. I would just contact them directly. When I looked into eligibility it states it is for women 40 and older. I know it is this way in Michigan too unless you have an abnormal pap smear. So don't be discouraged. Even when I went for my colposcopy, I was told I would be responsible for the procedure if nothing was found. Go figure, I am not the one deciding to have this done. But as long as it was needed and it was they would pay for it. So they cover screening and diagnostic seervices and help set you up with state funded care for treatment. Please contact them right away. There seem to be a lot of stipulations on time frames in which care must be sought.
Also want to mention that I have seen two docs thus far and I am currently waiting for a list of providers that participates with the program to see a third doctor. So please pay attention get all your records and reports. Make sure the doctors you see know your history, don't assume. You just don't have as many choices as you would with regular health coverage.
And I also agree with Corellin, it is very unlikely the cin 3 could come back like that. It seems much more likely they did not remove it all. If I were you I would look into getting all your records and another opinion. Not trying to scare you, sorry!
Let me know if there is any way I can help, I would be happy to. And make sure you let us know how you are doing.

Kate

By valleyohgirl
Posted September 25, 2009 at 9:35 am
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Thanks everyone for your comments. I'm going to check into your suggestions and I'm not giving up on getting help. I've had all the test done, pap, colposcopy, ECC, leep and have been positive with CIN III for over a year now. I'm really not that concerned about having a hysterectomy if that's what I need. I'm done having children so I just want to get this taken care of and be able to be around for my son. I'm more ticked off at the health care system this country has. Your basically screwd if your stuck in the middle, meaning you make to much for assistance but not enough to actually be able to afford the services you need. With all the taxes we pay on everything every person should be covered by some type of insurance, especially when it could be considered a life or death issue.

By valleyohgirl
Posted September 25, 2009 at 2:21 pm
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Ok now I'm feeling totally screwd! Called family services today to see if there was anyway of getting some type of help and the answer is NO. Unless I'm disabled & getting SSI I can't get help through medicaid. And because I live with my boyfriend(father's child) and he makes $300-$400 over there limit still can't get help. Called the Breast & Cervical Cancer project here in Ohio and because of my age,32, I don't qualify, have to be 50 or older! So basically I'm in that bracket of people who are just screwd at getting help. Even the lady on the phone at the cancer project admitted "ain't this a wonderful country we live in?" being sarcastic, yeah really F'in wonderful! Really wish I could call the president and just bitch about this health care bull and why people are supposed to just sit and wait to die. Sorry I just needed someone vent to.

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