Thanks, chachacha. I will probably end up seeing the specialist in UCSF. I'll probably have to wait a while, but I'll give it a try. I'm definitely still stopping the Lupron injections, though. I still have a gut feeling that it's contributing to my issues. I just wish my oncologist was more understanding. She really has no clue how debilitating this problem is.

I just read through your posts and I’m so sorry you’re going through this. I was just telling my husband that I feel like I want to die, my quality of life is so bad. I called three weeks ago to see a gastro again finally for the recurring fissures and they couldn’t get me in until August 28. I have three more weeks until I can talk to someone educated about this and I feel like I won’t be able to make it until then. I have a two year old and I feel like I’m being such a bad mother because I can barely interact with her or doing anything fun because of the pain and fear I have. I really hope things improve for you and I hope you continue to update! Just wanted to let you know you’re not alone with the way you’re feeling mentally and emotionally

Thank you MirandaYvonne. It has definitely been a tough road. I am so sorry you are dealing with fissures, as well. : ( I hope you can get a sooner appointment. It must be even more tough since you're a mother and have a little one to take care of. I couldn't even imagine. I have enough trouble just taking care of myself.

I know it's difficult, but hang in there! Things will get better. For myself, I have other issues going on that are making it hard to heal. However, I HIGHLY recommend the LIS surgery. It was a peace of cake compared to dealing with the fissure pain. If you've been struggling with this issue for a long time, I definitely would consider it. Most people heal completely in 8-10 weeks or so. I just have a bit longer due to my medication issues.

I hope you can discuss your issue with someone soon. Let us know how it goes. : ) I appreciate the support!

Just a quick update:

Still having problems healing, but it's getting there, according to my CRS. I saw him again today and he checked everything out. Once again, he told me to consider stopping the Lupron injections since estrogen is key to healing well and quickly. He said he only really sees my skin issues in post-menopausal women, which makes sense. I am still waiting for it to get out of my system. I still have a month or so until I see my oncologist. Then I have to probably wait a few more months for my system to get back to normal. It's been such a tough journey. : (

The good news is that the muscle is very relaxed now and I don't need any more surgery. So that's a positive. My CRS said he rarely does a second surgery since he always tries to cut enough muscle. He said the muscle shouldn't go back to the way it was, although it will get a little stronger as the year goes by. But nothing compared to spasm level.

Hope everyone is doing well.

Thought I would update this:

Still not doing well. Fissures are still there. I get blood sometimes, too. Pain is off and on. Bowel movements are sometimes painful, despite my soft stools.

Still feeling hopeless and depressed. My oncologist has absolutely no sympathy for me and did not want me to stop the Lupron, but I did. I was supposed to get another shot a week or so ago. Now I just have to wait for the chemicals to leave my body so my estrogen can come back. I am hoping and praying that that will help me.

I am thinking of switching oncologists. It seems like she has no patience for this issue and is not empathetic or really willing to help me much at all. When things are going her way, she's great. But if things get difficult, she distances herself and doesn't want to help. It's frustrating and I can't deal with it anymore.

I started seeing a therapist to work through these issues. It seems to be helping a bit, but I'm still frustrated at the lack of help I'm getting about this issue.

I am still taking Tamoxifen (alters estrogen in the body so it can't attach to breast cells and feed cancer), which I started last year. It seems like my problems started when I started taking that. I am afraid to stop it, though, since I am afraid of breast cancer coming back. Many online at certain breast cancer forum I frequent said I should take a break from it. If getting the Lupron out of my system doesn't help, then I will do that. I don't see my oncologist for 6 months to discuss that. I'm sure she will say no, but it's my body.

I'm waiting on referrals to another colon and rectal surgeon and a gastroenterologist. I'm not sure what else I can do. I'm stuck. Covid-19 has made the waits even worse for specialist referrals. The CRS at UCSF is not taking new patients due to Covid, so I was recommended someone up at UC Davis.

Someone online suggested I see a urogynecologist. I'm not sure what they could do, but it's worth a shot. Apparently they can treat fissures, too? I wasn't aware of that. If anyone has any idea how they could help, I would appreciate it.

I'm willing to do anything at this point. So tired of not healing and tired of dealing with pain every day and fearing the toilet.

I'm still taking Nifedipine, although I will have to switch back to Diltiazem ointment since my insurance will not cover the Nifedipine and it's $100 a tube, which I cannot afford. It does the same thing, so I am switching back. It's better than doing nothing.

Wish I had better news to report, but that's where I'm at.

I hope everyone is doing well and healing. I hope I can get there eventually.

Take care.

I have almost always found that specialists aren't particularly concerned with your peripheral issues, and only focus on what they can and cannot do for you. I hope that you can find a replacement who will look at the whole picture, and care about it.

I hope that someone will weigh in on their thoughts on the urogynacologist and that their experience was a good on.

Medical problems can really be tough nuts to crack, so I hope that you can figure out and treat your own situation soon. I wish that it wasn't so often up to the patient to do so, and pity those who don't have the skills needed for research and group medical co-ordination.

Thank you, chachacha. I am just trying to hang in there. I refuse to believe that this is a permanent issue. I simply could not live my life if it was. It is that bad. I just hope and pray that getting this drug out of my system and allowing my body to return to normal will help me. Of course I will see the specialists, whenever they happen to get back to me. But for now, all I can do is hope and pray for some kind of miracle.

I did get a new primary care doctor and will be seeing them at the end of the month, so that is a start. They should hopefully care more about my problem than my oncologist.

Thank you for the reply. : )

I always see as many specialists as I can, because you never know what you can learn from them (and them you). And I also never give up trying to find solutions. Good luck with your upcoming appointments!

Just a quick update:

Saw a dermatologist (well, PA dermatologist). She honestly didn't know what to do, but told me to put Aquaphor on the area, which I will do since it's a bit dry. She looked and didn't notice much. Fissures and tearing area inside, so she couldn't see much at all. She could not tell me if Tamoxifen or Lupron caused my issues, but she said everyone reacts differently to medications and just because you have a rare side effect doesn't mean it isn't real.

She suggested I use Nitro ointment, but I really don't see the point. I haven't tried it because I am very prone to migraines and headaches. Both of my CRS doctors told me they no longer prescribe it and that Diltiazem and Nifedipine are just as effective (I've read studies stating the same thing). She is going to write me a prescription, but I highly doubt my insurance will cover it. I know my insurance denied it when I went through chemo last year, which is why I took the Diltiazem. I believe Rectiv is like $500 or something insane out of pocket? No way will I pay that on my income. Honestly, I do not see the point since the muscle is no longer in spasm due to LIS. I just use the Diltiazem still because it doesn't hurt and it keeps the area moisturized anyway. It's a skin issue, which is why I saw the dermatologist in the first place. I feel like I haven't made any headway with this. : (

Seeing a new CRS and a gastro next month. Hopefully they are more helpful, but we'll see. This is so frustrating. I am tired of this constant awful cycle. I just want to heal!!

I hear you. I may have sorted my anal issues, but I have other ones now that don't seem able to be resolved, no matter how many specialists I see, or how much research I do.

You're lucky to still have the CRS and gastro to consult with next month, because they might be able to find a way forward for you.