intense Burning Nipple Pain

[Buckeyegirl]

I have had for several years an INTENSE burning pain in both of my nipples. I get this pain approximately once a day. That doesn't sound like a lot, but once I get the pain it stays with me throughout the day. Lately the pain has been more severe. My breast specialist has put me on Tamoxifin which I have been off and on for the past four years. He last put me on this in November 2009. This medication is not helping. He said to give it a few more months. I had a hysterectomy in 2004 at The Cleveland Clinic (at age 30) and have since had both ovaries removed at two seperate times (2005 & 2006), plus and ovarian remnant in 2006. I have never had any children and I have obviously never breast fed. I add that statement as the only information that I can find online is in regards to breastfeeding. The pain that I experience is so intense that it makes me so sick. I have a HUGE pain tolerance, but can no longer stand this burning pain. When this pain occurs the nipple turns colors (white, purple) from the normal flesh color. I don't know where to turn and the doctors don't have any answers for me. If anyone has any information for me on this matter I would greatly appreciate it.
Thank you all in advance,
Tracy

[Buckeyegirl]

Ladies....
I simply just wanted some answers if somebody had them.....I in NO WAY intended to started a argument between us women who are in pain. OMG....I apologize....
Good luck to all of us
Tracy

[zouzi]

Good for you Marylou_II .Moving to another site were you can get excellent advice and answers, is the way to go....Good luck!!

[Marylou_II]

I am sorry you find that all I do/write is wrong or at least mistaken Your first note was about my supposed many profiles and birthdays, I did as you told me and wrote to the those you said I should contact. I got a feedback from them, they said I never had multiple data or profiles and that they did not understand what had happened. Your wrong post is stuck in my profile to remind me of what happened. I dropped the subject and let it go I was feeling too sick to clarify anything. But you did not think what was my situation when I registered in this forum, I was desperate but you were only after whatever mistake you thought I made. I hope you remember this is a medical site and that people who post here are sick, in pain or scared to death medicine also includes "humanity".

Now in your first post above you tell the asker to ignore my post and claim things that are not true. I know her first post was from 2006, but I have noticed that when people post more than once they never get an answer. That is why I mentioned the issue to Buckeyegirl, the links I posted are perfectly correct and could be helpful to her as what the doctor answered was of no help for Buckeyegirl remember she is in great pain, that type of posts by doctors should not be permitted and I have seen way too many of the same kind. After this second "mistake" you made you back out and post something which is not comprehensible.  

Check my first post in this site, check what I was answered by the doctor and what finally happened. According to the doctor I was jumping the horse or something like that, but it so happens that I was found to have BC, I have been through all that was denied as possibly being true and I have been through a lot of pain and suffering to finally get a mastectomy, so who is jumping what?

I believe it best for me to withdraw from MEDHELP as all I do my very best to help all others who never get a reply because I know what it is to be in pain and get wrong answers from those who are supposed to know. I have not posted anything else on my BC because I don't need that type of answers I prefer to Google for them.  

I won't be around for you to keep picking on me, I am moving to another medical site where I have been in the past days and got excellent answers from them.



      

[bluebutterfly2222]

Correction: I should not have said to ignore the above reply, as the links provided may be helpful.

What I meant,  was to ignore the comment about having posted on the same subject TWICE (referring to the 2006 post).

[bluebutterfly2222]

Please ignore the above reply.  Apparently the poster did not notice that your previous post, which she  directed you to with a link,  was in the WOMEN'S HEALTH FORUM, not here, and was from way back in 2006!!

You had every right to post here, and were indeed directed to do so by the Community Leader of the Breast Cancer Community. Post as often as you wish! If they do not accept your question, that is their decision, but you don't have to limit yourself by trying to anticipate whether they will or will not.

I am just sorry you did not get a more helpful response.

Best wishes...

[Marylou_II]

Hi Buckeyegirl

I know you may have posted twice in the hope to get an answer, but unfortunately many users go by without an answer for a long time or never get an answer, I don't know why this happens but I believe it could have been because of the double post.

I am a Breast Cancer patient I am not a doctor but I am a good searcher and use Google a lot to get answers for people like you as I can imagine how painful it must be. As a cancer patient I know what pain is like, therefore I hope the enclosed links will help you get an answer.

http://www.thewomens.org.au/Nipplevasospasm
http://www.cancer.gov/cancertopics/factsheet/sites-types/paget-breast

If you don't get anything you believe is helpful drop me a note and let me know so I can search again and try to help you out in the only way I know how.

Best regards.

[Buckeyegirl]

Well I should of known.....I know I posted the question on a breast cancer forum and I know I don't have breast cancer, but I was directed to post my question on this sight. I swear I will never get any help with this matter. Doctors all tell me to seek out a pain management specialist and then when I do they then send me to the therapist. Who then say that my pain isn't mental and they send me back to the pain managment doctors and then I get into a back and forth game. I am getting so tired of this game. I have searched and searched online for anyone who has dealt with this problem and can guide me to a doctor to help, and have come up with nothing. When I have gone to the Cleveland Clinic they look at me as if I am crazy. Just because they can't put a name to something doesn't mean it isn't real. For one day I would like for a doctor to experience this pain then maybe they could help me. I know I am venting, but any help would be great.
Tracy

[Cleveland Clinic]

Dear Buckeyegirl:  Without evaluation, it is impossible to speculate on what may be causing your pain.  As this is a breast cancer forum, our expertise lies more in the care of breast cancer than in benign breast disease.  A breast specialist is the appropriate specialist but if there are no ideas, you may need to see a pain management specialist.

[Buckeyegirl]

I know I have posted this question before, but never to the "expert" forum. I have had this pain off and on for your and it is getting worse and worse. I did see a breast pain specialist at the Cleveland Clinic, but she had no suggestion. I don't take an estrogen while I am on the tamoxifin as that is a contradiction. I wish it wasn't as my hot flashes are crazy, but I would rather deal with them then this burning nipple pain. I don't think that the doctors totally realize how horrible the pain really is. I am totally gratful that this is not cancer trust me, but the pain is something that is affecting my livlihood. I do have an appointment at the Cleveland Clinic next month, but I am not very optimistic.
Thanks again for your post and I will keep everyone posted!!
Tracy

[Marylou_II]

Hello:

I don't know if you remember but you posted the same subject in this site, the link to your post is:
http://www.medhelp.org/posts/Womens-Health/Burning-nipple-pain/show/31950

Didn't your doctor correct the issue of you taking estrogen medication while you were on Tamoxifen? That is an absolute contradiction you did not have to know about it but your doctor should have known better.

Why don't you go back to the Cleveland Clinic and have the same doctor who checked you before do the follow up, it is the least he can do. Is he a breast specialist? If so then he should know what to do to stop the pain and find out what is wrong. If he is not a Breast Specialist then find one as soon as possible, they know how to handle these situations they have a trained eye.

Please get an appointment as soon as possible and keep us posted.

Take care and best regards.