Human Papillomavirus (HPV) Community
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700648 tn?1228276136

is probably not related but im desperate

pap smear showed sign of a lesion in marhc 2007 and I was diagonosed in may 2007 with hpv low grade cells on my cervix. A year earlier i had a procedure done to removed endo from the back of my uterus which i was having random painful pelvic pain located on my left side.  The pain increased after the procedure leaving me with chronic everyday bad pain and needing morphine daily to control it, the pain got even worse and after many failed attempts to find help and my pain getting so bad i couldn't step over the bathtube to get in the shower, i opted to remove my left ovary after an MRI said i had potential endo on it (an ulltrasound also revieled a cluster of large blood vessels which has gone unexplained to me). Last resort kinda thing, it did get ride of the pressure and cut my pain in half allowing me to talk less morphine.

I was told in October 2008 that my hpv was gone, this was my second clear check up. only to find out in September 2008 oops its still there and we cant give you an answer why. The first time it was a horrible emotional stressor to the point where i wouldnt go near men and wore latex gloves to wash (yes i know thats just stupid but i just felt so disgusted with myself it was the only way i could carry on with hygene lol) This time fortunately im dealing with it better, but its very unsettling to me to have never been informed by my doctor that "oh these things rarely happen and we dont know why".

So my questions are simple:

1) can my hpv have caused my so called endo pain/might be something total different pain to increase?

2)why after being reasured it was gone that it was actually never gone?

3)ive always had a weak immune system and i tried some kinda herbal yogurt thing to help boost it, but obviously didnt benefit from it lol. Is the infection not going away cause of my weak immune system? Should i be seeking a specialist for immune deceincies?

4)is there a risk my low grade hpv will turn into high grade since ive had it for so long?

5)is there a high risk of me spreading my low grade hpv with it being on my cervix?

6) why wont this go away??? even if i get the 2 clear check ups how am i suppose be able to feel confident about it not being another miss and ill be told i still have it a year after the a-okay?

im probably leaving something out lol. Thanks in advance for any input.
5 Responses
Avatar universal
You need a doctor who will explain everything to you and take the time to answer all your questions.  I didn't get that type of treatment until I found a gyn oncologist who specialized in HPV.  I don't have cancer but I do have HPV with low grade dysplasia and that is the first step on the way to cancer.  Cancer however is not inevitable and it is very slow progressing when it involves the cervix.  I will do my best to answer your questions although I am not sure what you mean by endo. Are you referring to endometriosis? Endometreosis can be very painful but I am not aware of it being related to HPV.  Maybe someone else on the forum can comment on that.  You can test positive for HPV then later test negative for it if your body has "cleared" the virus.  Generally that is believed to mean not that the virus is completely destroyed but that it is hibernating much like chicken pox virus does after you have that illness.  That's right, you still have chicken pox virus despite the fact that the last time you saw the lesions you were only 2.  Viruses can reassert themselves from the dormant state at times of stress.  From what you described you have had a lot of physical and emotional stress during this time.  You do need to strengthen your immune system.  Please see the recent post "HPV, Now WHAT??" by ucfgurl and the responses by Wesson30 and simplynat.  Those are immune strengthening suggestions. Low risk HPV will not turn into high risk HPV.  However if you have a lesion on your cervix it is the result of a high or intermediate risk HPV, not a low risk HPV.  Your doctor probably told you that you have a low grade lesion or low grade dysplasia.  Again, your doctor isn't making sure you fully understand what's happening.  If you have a lesion on your cervix you can spread that HPV.  Using a condom will not completely protect your partner.  Since you had an abnormal PAP, your doctor should have you back in at least 6 months to repeat the test and if it is another abnormal then he may do a colposcopy to look more closely at the cervix (frankly with your history I would just insist on this).  By the way that mass of blood vessels seen on MRI is an indicator of a precancerous or cancerous condition.  Cancer requires a lot of blood supply and such a cluster of blood vessels may indicate either that cancer is there or that it is beginning to form.  You have had a number of serious gynecologic conditions so you need to see a specialist.  You can ask around about a really good gynecologist or seek out a gynecologic oncologist.  If you live near a major medical center look up their gynecologic oncology or gynecology departments and talk to the secretary or nurse for the chief of the department.  She can tell you who specializes in what and who would be good for you to see.  Good luck.  
700648 tn?1228276136
Thank you Wesson30 for the sound advice about the large blood vessels i will do my best to find help, unfortunately ive seen many specialist even went to the montreal pain center and was dismissed there excuse was that they had no gynological resources what i read was that they didnt know what to do and didnt believe a 26 year old could have severe pelvic pain which my gnyo diagnosed me with endometriosis and has a suspection of fibromyalgia. I cant find any information on fibromyalgia in the abdomen. I've had 2 surgeries one in 2006 to remove endo off the back of my uterus and another in 2008 which was really just a last resort, my gyno removed my left ovary. It's pathetic by my standards when youre that desperate you start chopping body parts out of you and still only my gyno shows empathy and shows belief about my pain.
I read the info on boosting immune systems i was just wondering if theres was something more. I been going for colposcopy every six monthsfor biopsies and 2 times in a row clear on the biopsy and clear pap. i left out a detail before by mistake, when i got news that my hvp was still there the pap was in conclusive and the biospy showed low grade dysplasia/skincells, the lesion was in the pap my gyno had done (who by the way never called with the results). I am aware it is similar to chicken pox but the specialist im seeing said relapse can happen down the line, never mentioning that hpv can play peek-a-boo. By what youre saying theres no way to know if the infection has cleared??? My general practioner, gyno and the colposcopy specialist have all said it was safe to use a condom and i did have my doubts and you've pretty much comfirmed those. My GP even said "go, have sex, if he gets a wart he can just get it burned off". My jaw dropped.  I seem to attract the bad doctors which is of course written off as me being difficult.
Thank you again about the large blood vessel tip, i had no idea and my gyno simply shrugged it off as nothing. I get large black blood clots too is that a sign as well? they are also very painful to pass. My gyno has put me on 24/7 birth control for over a year now and for the past 6 months is making me now take 2 pills a night everynight to stopped the breakthrough bleeding and clots but if i miss even one pill just by a couple of hours the pain jolts up.  The pain is now effecting my lower back where i feel like i've been kicked in the spine and the foot got lodged in there, its very painful and again dismissed( have not gotten to see my gyno yet about the back pain). I use Medicare but am actually looking into paying a private doctor to take my case, maybe then i'll get the help i need and well deserve. you wouldn't by any chance know how to find the good doctors out there do you? lol. thanks again. take care.
700648 tn?1228276136
sorry for the double post but i forgot one thing. before the surgery to remove the left ovary i had alot of pressure on that side (my pain is a stabbing pain to the left that over the past 3 months i get very sore cramping to the middle of my abdomen as well). after having the surgery it seemed to relieve that pressure and cut the pain in half. I've noticed sitting/driving for more than an hours makes the pain alot worse, my bladder getting to full does as well, sometimes bowel movements can be painful when passing and standing still for more than 5 minutes gives me that back pain for the rest of the day and it sometimes lingers for days. I get migraines that are just horrible and in the past 2 months i have naseau quite often most days i cannot eat or even when forcing myself cant keep anything down (theres been alot of mishaps where i end up vomitting on myself it comes up so quick.) theres not much i can do excerise seems to only land me in bed for a couple of days after. sad to say im almost a cripple and sometimes have to rent a wheelchair if i know there's a walk facing me.  all i have is my gyno that believes me... its getting really hard my 7 year old is scared im going to die from seeing me so sick and no matter what i say i cant make that fear go away, shes also so heartbroken that no doctor will help.  The endometriosis was so small on  the uterus and the potential endo the MRI picked up was actually just a cluster of regular sized sists. The MRI also showed potiential endo located on my right ovary and cul-du-sac.

So reaching at straws i did think my pain worsening could be the hpv provoking the endometriosis, but theres no evidence of that nor can anyone confirm a possible.

Could all this pain i'm having really just be from the large blood vessels?
Avatar universal
You have so many symptoms and your medical advisors seem to be less than completely focused on seeing the big picture.  My heart goes out to you.   You might do better posting on the fibroids or other women's health forums.  You can outline your symptoms and present them to one of the MedHelp doctors for about $15.  Also, you may want to research on the internet for a major medical center associated with a teaching hospital that has a strong gynecology department.  Get together copies of all your test results and medications.  Then make an appointment with the head of the department or any lesser human they will book you with.   If you can't get a specialist appointment that way see if your regular gyn can give you a referral to someone who will see you.  If those efforts don't work then just wait until you have a bad attack and go to the emergency room at the major medical center you have identified as having a solid gyn program.  Under the COBRA laws they have to "stabilize" you.  Most hospitals are so afraid of violating COBRA that they do a lot more.  In your case being stabilized could mean getting a gynecology consult.  I really don't know what else to tell you.  In response to your question about clearing an HPV infection, the only way to know if an HPV infection has cured is to get tested for that same strain again.  If it is negative then your body has successfully suppressed the virus.  I doubt your pain is from big blood vessels.  More likely you are feeling symptoms of endometriosis and/or fibroids.  Both of those respond to hormone shifts so are worse at some times of the month than others.  Good luck, pattypumpkin.  
647397 tn?1307056615
Hi Pattypumpking! I read your post and made me remember how I felt whenI foudn I got HPV CIN 1. and just last week large fibroids..I under HPV treatment now and looking for the right way to go with the fibroids at the moment...I just want to sayto you that sometimes is difficult to find all the answers in the doctors, you might want to read around the forum there are excellent postings from fellow members which can give youinsights and lead you to find answers or to ask the right questions.. I am sure youwill feel things go smooth in your mind when start to hang around. so welcome and good health to you!.
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