What’s Your Pain Level

How is it that our doctors don’t scour the internet to read forums and see what people are saying about our treatments? How is it that I have heard and read (even on the packaging for my lovely Tamoxifen) that certain side effects might just happen to a number of women but my oncologist says that is not the case?

There is nothing more irritating than knowing something is not normal and having a doctor or ANYONE tell you that it has absolutely nothing to do with your treatment and then STILL not help you figure out what it is. When the response is, ‘It’s not the meds, keep taking them.’ And you ask, ‘What is the issue, then?’ and they can only answer, ‘I don’t know’ and go no further to help you, there is a problem.

A very serious problem.

I don’t care about that the fact that the ‘issues’ are probably not life threatening, it is just that I know there is something up and I want to know why. I want it acknowledged that something is not right.

I mean, I haven’t complained to my oncologist about the silly things:  the acne (I have NEVER had acne in my life but this hormone blocker is making me break out like an 8th grade boy), the expanding hips (Ill just keep up my workouts and complain to Blake and all of you about that one), the cracked and peeling finger nails, etc… But I have told her about the things I think she can either help or reduce and the things she may want to know about as they are considered abnormal or serious on the packaging.

Those things include blurred vision and trouble focusing and constant sore throat, bone pain and severe uterine pain.

My cycle has moved from a solid 28 days to 30 days, to 34 days, etc. It hung in there for a while but recently it went all the way to 46 days. On day 43 I doubled over in pain while taking a shower and freaked myself and Blake out. The next morning I called my oncologist and she told me to go in to the ER to get checked out.

I did, of course. I do everything they tell me. I can’t help it.

I  wasted 5 plus hours of my life only to leave the ER with no information. The doctor did not tell me any of my test results or give me copies as I requested. Instead, he came in and said that he had talked to my oncologist and had decided that it was all in my head.

Of COURSE I was making up the horrible pain and absentee period! (Sorry if that is TMI, but bodies are strange creatures and that is actually relevant)

Completely logical explanation.

The next day I received a call from my oncologist’s nurse and she told me that they did find a cyst. This is not abnormal to me, as there are cysts in every ultrasound I have ever had. I even told them there was probably a cyst there, but this was not normal pain for a cyst. Nor was it located in a normal cyst pain area. Anyway, she told me it was probably the cyst I was feeling when I experienced the pain- the pain that I informed her had dulled but was still present. I inquired about the, now, 44 day cycle. Her response was that my doctor said it had nothing to do with my estrogen blocker. That’s it.

Up until last Friday I experienced that pain constantly and I had absolutely no idea what to do about it.

My positive thought is that I go see my surgeon two weeks from today and he and his staff seem to know more about the treatment of premenopausal women than my oncologist does. They prepared me more than she has, for sure. I fully expect to leave the surgeons office with answers or at least an idea of what is going on and I know they will help me if they can- if it is possible.

Because dang it! It hurts!

Maybe it wouldn’t be so annoying to me except that I DO NOT complain about pain. I just don’t. Not until it is ridiculous.

My mother used to stare me down when a nurse asked my pain level after surgeries. My answer is always 3. I think any pain that is not making my want to kill things is a 3. I have gotten screamed at by my loved ones for refusing pain meds more than I can count. Going to the doctor and asking for help was really tough for me to do, but I was really in that much pain. And I was scared.

So. Do you guys have any info you can share? And advice or links to advice? I’ve read every forum and popular medical site that addressed this with little luck.

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14 thoughts on “What’s Your Pain Level

  1. Can you get a second opinion from another doctor? I don’t know that there’s anything else to do if your physician won’t seriously listen to you.

    • I think once I talk to my Surgeon- who has been my fighter from the beginning- if it IS something they know about and have heard of, I am certainly planning to ask if I can see another oncologist. I know that they will help me with that as they work together in teams at UAB.

  2. Bekah, I am so sorry. And I apologize if this sounds ridiculous but I am wondering if you are experiencing monster intensity pre-menstrual cramps. My cycles were HORRIBLE when I was a teen and up until I had a baby at age 32. The menstrual cramps were worse than any pain I’ve had since that time, including childbirth and seven surgeries. And I used to have those 40+ day cycles. You might want to see your gynocologist.

    • I go to a free clinic for my gyno and they are epically unhelpful, however, Im trying a different free clinic the 22th. Hopefully that will be better. My original one is the one I had to pitch a screaming fit to have a mammogram because she was just SURE it wasn’t cancer. Then 5 separate times I have seen her for my cysts and shes said, ‘thats not a cyst! it feels like a normal ovary’! only for me to go have procedures done for my tummy issues and them find cyst after cyst after cyst. Literally every time.
      Crossing my fingers that this one is helpful and they tell me more than they did in the ER after my exam… blah. And Im hoping it IS just monster intensity per-menstrual pain!

  3. I can’t explain everything or anything except that I have encountered some practitioners with TUNNEL VISION. All they know or acknowledge is that treatment eliminates, reduces, manages, etc. cancer. They wash their hands when you have side effects or dismiss them as being minor. I’m sad to hear you have pain that is ignored. That hurts on so many levels.

  4. I can only comment on doctors not understanding the side effects of what they are giving you. I was only the 2nd person my doctor ever treated with APL in his career. So I understand he didn’t have much experience but when I kept coming to him with debilitating migraines and he would say “I don’t know what it is, it’s definitely not the medicine” and then I find out that in the info packet AND research on the internet that 80-90% of people on that med experience that it made me really upset. It’s one thing to say you don’t know, it’s another to insist it’s not the medicine when you really don’t know. If he had even looked a little bit he would have found out that fluid builds up on the brain and a spinal drain is needed to relieve the pain. I was in pain for nothing.

    My opinion is that they say it’s not the medicine because they don’t want you to stop taking it. They don’t want the headache of having to convince you to keep taking it. I think that is a cheap way out. They should inform you of everything.

    I really hope your surgeon helps but how I found out about the headaches was I found a bunch of people online that had my same diagnosis and asked them. Then I found someone who had a doctor who actually did something about the symptom and found out what could be done. Sad that we can’t just rely on the doctor to tell us what to do anymore.

  5. I hate you are experiencing all these side effects and all the pain. That completely sucks!! When you see your surgeon ask about The Supportive and Survivorship clinic on the 3rd floor of Kirklin Clinic. They focus on any of the major and long term side effects you are dealing with and let your oncologist just focus on treating your cancer. They help with pain /chronic pain, nutritioun and other long term side effects. The unit has been really trying to help manage my pain and are very, very thorough! Which is always at the top of my list when getting/adding a new doctor. They treat patients at any stage of their cancer journey. From the first day you are diagnosed until you are off chemo, radiation, or other treatments. I am 12 years cancer free and post transplant and they were happy to help me out. You can look into the unit online just search for either UAB Supportive care and Survivorship clinic.. The doctor I am seeing is Dr. Kvali and she is awesome. Amazing bedside manner and truly wants what is best for you. I hope this info. will help you. If you have any questions you can always ask me. You are definitely in my thoughts and prayers!! Let me know if you get into this clinic.

  6. I know you said this pain didnt feel like a cyst but for the cysts you do get there is something you might look in to. I know adding another medication is SO not what people want to hear, but check with your doctor about a birth control pill.Even though I cant have any more kids I had to go on one for the sole purpose of cyst prevention. They were absolutely debilitating and can cause pain not just in or near the ovary, but all along the lower abdomen, esp if one ruptures instead of reabsorbing. Then you get the pain of passing the ruptured cyst for a few days as well. Good luck with everything! If you need the names of some good docs here (UAB) just let me know.

    • I can’t use any hormonal birth control 😦 Tamoxifen is an estrogen blocker (my breast cancer is hormone receptive) and they can do all kinds of horrible things when taken together. It’s a real annoyance for sure!
      If they would give me a script to help ease the side effects I would soooo not mind, though. I love medicine if it makes me better! Haha

  7. Pingback: Giving in to the pain? | Run4joy59's Blog

  8. Ahh…you silly women, it’s all in your head…the medical profession has been saying this since, well…since there has been a medical profession, I guess. I hope you’re able to find some answers and some relief soon…and maybe a doctor who actually listens to what you say…

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