Hormone Therapy and Anal Fissures
I hate talking about this since it's very embarassing and painful, but I have been struggling with reccurent anal fissures for the past several months. I had them all through chemo and after chemo they all healed quickly and I was back to normal for several months. Then, when I started hormone therapy last October or so (Tamoxifen and then eventually Lupron), they started back again with a vengeance and just got progressively worse. I do not have constipation problems that might have caused this (or horrible diarrhea) and no other digestive issues except for acid reflux.
I was just wondering if anyone else had these issues with hormone treatment or if they are somehow related. I got surgery for the fissures in June, but even with a 98% success rate, I never healed (or they would heal for a few weeks, then come back). My colon and rectal surgeon said the skin in that area was "like the skin of a 90-year-old woman" and was dried out and cracked. He said it would take a "long time" to heal. I told him I was on hormonal therapy (Lupron) and he told me to stop the Lupron, even if temporarily, so my body can heal since estrogen is important for wound healing and skin strength. I stopped the Lupron a week or so ago (I was on the 3-month shot and I heard it can take a long time to get out of your system) much to my MO's dismay, but I'm still taking Tamoxifen. My MO believes none of this is related to the fissures, but why did I start getting them after starting all this? My skin was healthy (checked by a colon and rectal surgeon after chemo, who said it looked healthy and was healing) and now it's a mess. : (
I am so frustrated and trying to find answers. I posted this on the ovarian suppression thread, but thought I'd get more viewers on the general horomone therapy thread. My MO has been no help on this and I am stuck waiting on referrals to a gastroenterologist and another colon and rectal surgeon due to Covid-19.
I am sorry for the long rant, but this has been awful for me and I wouldn't wish this on my worst enemy. It has been pure hell and makes me want to quit all of this. Thank you for listening.
Comments
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peridot180, Have you seen a urogyn for this problem? He or she might give you another opinion on the type of surgery/treatment you can have. Would your MO let you take a tamoxifen holiday so you could heal? Did the doctor recommend any supplements like vit c, zinc for wound healing?
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flashlight - No, I have not. My MO didn't refer me to one. Usually you are supposed to go to a colon and rectal surgeon about this problem, which I have. I'm not sure what a urogyn could do for me since it's not a urinary or gynecological problem. My MO probably does not want me to stop the Tamoxifen. She refuses to believe this has anything to do with hormones, which, from what I've read online, estrogen plays an important role in skin health and healing. I've even read reports of women who breast feed being more prone to fissures (not related to birth trauma) because of the huge drop in estrogen during that time. One person said their urogyn said that's why she couldn't heal her fissures. After she stopped breast feeding, the problem went away since her estrogen came back to normal. I'm honestly not sure what to do anymore.
The doctor did not recommend any supplements. I eat healthy and exercise (always have), so that's not a major issue.
I'm just at a loss of what to do. My MO is completely useless and doesn't take my pain seriously. I already stopped Lupron, but have to wait for that to leave my system. Tamoxifen I'm afraid of stopping due to recurrence obviously, but it seems like all my problems began with starting that. I'm just so frustrated about all this. My MO has just completely given up on me, it seems. I think I will have to search for another MO since I feel like my health issues are not being taken seriously. When I asked her what my reccurence rate would be without these meds, she couldn't even give me a straight answer.
Honestly, my quality of life is so abysmal with this that I just want to quit everything. I just can't take this pain anymore.
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peridot - so sorry you're not getting good answers from your docs. I actually looked this up & found the Mayo site informative. Have you tried Nitrogen? https://www.mayoclinic.org/diseases-conditions/ana...
I don't take Tam or Als, but for years I've used "Mycalog" cream for occasional recurring anal 'cracks'. It was my OB/Gyn who originally prescribed this. Now there's a generic combo of Nystatin/Triamcinolone, although it seems most drug insurance does not want to provide the combo at a reasonable price. URGH. Still it's been worth it for me. Fortunately this has always stopped them before they grew too big & I used to use a couple of days every month. I have very few problems now that I'm past menopause, I so only have to use it once or twice a year.
But as to Flashlight's question - I to take supplemental Vitamin's C, D3 and E.
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peridot180, I hope you can find a new MO that can help you. I had suggested the UroGyn because they do surgery on different type of fissure and was wondering if a estrogen cream might help you. Maybe you need to get a second opinion from another rectal surgeon about different types of treatment other than surgery.
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MinusTwo - Yes, I have tried all the creams. They do not help. I still take Diltiazem ointment because it doesn't hurt to take it and it keeps the area moist. It's the only one my insurance will cover. The Nitroglycerin gives people INTENSE headaches and is no better than Diltiazem or Nifedipine ointment, so I stick with the Diltiazem ointment.
I have never heard of Mycalog cream, but I will look into it. I do not have good insurance, so they probably won't cover it. I will search for info on it though. Thank you for the suggestions!
flashlight - I was not really aware about UroGyns. I will see if my insurance will even cover one. I know a lot of people have used estrogen cream for this issue and healed due to it. I don't think my MO would like that, but it's worth a shot. Is that over the counter or do you need a prescription?
I have done all the typical treatments for fissures (mostly creams that dilate blood pressure so the fissures can heal), but nothing has helped. The skin is just so dry and thin down there and even if they start to heal, they just reopen again because the tissue is so fragile. My CRS thought it was due to the chemo, but I healed extremely quickly after chemo was out of my system, so that can't be it. Again, all my problems started when I started taking Tamoxifen and then got 10x worse when I went on Lupron. I can't help but make the connection, even if my MO refuses to see it. My CRS said estrogen is vital for skin health and healing. I just don't think my body likes not having it.
I want to fend off recurrences like everyone else, but I can't live like this anymore. I have no quality of life, like I said. I can put up with a LOT of side effects (and have all through treatment), but this is where I absolutely draw the line. It has been HELL.
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peridot180, Yes, you need a script. I was told it was safe by my Gyn and MO if Tamoxifen gave me the side effect of vaginal atrophy. One side effect I didn't get...yet!! I went off tamoxifen for 6 weeks for surgery and recovery. My MO didn't think I needed to, but I'm glad I did. I feel I healed faster because I felt better off it, less tired, less anxious. I have seen other post where some have taken a 4-week holiday. Good luck to you.
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Thank you, flashlight. I really appreciate your help. : ) I'll see about seeing a urogyn and ask about the estrogen cream. Also, If getting off Lupron doesn't help me completely to heal, I will probably have to take a Tamoxifen break and see what happens. I'm willing to do anything at this point!
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I am so sorry you are dealing with this. Hormones really do a lot more than people imagine. I wonder if you could do vaginal estrogen like vagifem or imvexxy or even the Estring...these are doses in micrograms. I use it because although I have horrible atrophy, my issue was my bladder and it has helped a lot. It may help with the skin near the anal area too. Atrophy never gets better and at some point, no amount of cream will help (coconut oil and olive oil worked well for me for many years till it didn't). I doubt they would want you to use the estrogen cream, but maybe a small dot, once/week massaged into the anal area....?? Maybe your Onco has an opinion. Best to you.
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Thank you, wallycat. I will be looking into estrogen cream. I really hope this is not a permanent problem. I don't know what I will do if it is.
Honestly, this has made me feel suicidal sometimes and I don't know what I will do if I have to live with this for the rest of my life. I am seeing a therapist to help work through this and taking antidepressants to help.
Unfortunately, my onco is no help. She has pretty much given up on me at this point since I refused to take any more Lupron.
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Peridot180---I could have written this post. I'm suffering from recurrent fissues over the past year, along with vaginal atrophy (totally the tamoxifen because I'm 42 and still getting periods), rectocele, an external hemorrhoid and skin tag, and tight pelvic floor. I'm under the care of urogyn, derm, colorectal, and pelvic floor PT.
I cried all the way to work today because I ripped open today in yet another place, and this is with reasonably soft (but large) stools. I take guar gum benefiber, and some magnesium citrate. Eat a lot of vegetables. I'm not constipated but that first bowel movement of the day is a struggle because (thanks to the rectocele) I have to "splint" the area to get it to come out by using perineal pressure. This often causes a fissure in an opposite spot because of opposite pressure. But what's a girl to do? And then I have 2-3 more loose bowel movements after that. Every day it's the same. If I back off of the fiber and mag, it's rock hard, but upping the mag to make it even looser just causes a rash. And they say you shouldn't keep stools loose all the time or the muscle will never work, but it doesn't work. It's like the tissue literally can't handle it. I've been starting to wonder if it's because of the tamoxifen. I say this because of the vaginal atrophy, as well as super sensitive and fragile gums. It's like my mucous membranes are just unhappy.
I'm under the care of a lovely colorectal surgeon, but I sense she's hesitant to try the ointments because I rash up extremely easily. Anything other than vaseline causes a rash in the rectal/anal area. Even blood from my period gives me a rash (and tampons just don't jive with vaginal atrophy). And I have some minor stool leakage at times, so I'm sure she's hesitant to do any sort of procedure in the area that could cause stool incontinence, then I'll have a permanent rash, you know?
My husband said to me this morning, after shrugging, that this might just be what I have to deal with in life. This was part of my crying in the car. I get what you mean about not wanting to deal with this for the rest of your life. Pooping is a nightmare but we have to do it every day. I worry and second guess everything I put in my mouth---because what issue is it going to cause. And then sitting the rest of the day....it's uncomfortable to sit. I also get tendon/joint discomfort, so standing and walking isn't great either. 42 years old. I'm going to start crying again...
:-( I figure I'll give this new fissure a week, and if it's not getting better, calling colorectal again. I don't know what she can offer though. I guess if she wants to try an ointment, better have derm on speed dial for emergency rash drama.
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gb2115 - I am so sorry to hear about your troubles. : ( Fissures are horrible! It sounds a lot like my situation, but it seems like you have even more issues than me. If it's Tamoxifen causing it, can you stop it or take a break? It just does not seem worth it to me, but it is a very personal decision. I just could not live like that myself.
If Tamoxifen is indeed causing these issues, I refuse to take it. I just cannot live like this anymore. I will take my chances. All this started when I started the Tamoxifen. Are there other medication options out there besides that?
My troubles got even worse with the Lupron. Were you never told to do ovarian suppression since you still get your periods? My MO was very adamant about me doing ovarian suppression.
I really appreciate your post. It makes me feel not so alone. Your husband does not sound very understanding at all. I am sorry you have to put up with that. It is hard enough!
I really hope you find some answers. Did you ever consider surgery (lateral internal spincterotomy)? Or is the muscle not tight? It unfortunately did not help me very much. The skin is the main issue with me. I just want to heal!
For myself, I am going to see how I do without Lupron (which takes at least a month or more to get out of my system). If that doesn't help, I will probably just take a break from the Tamoxifen and see what happens. It is risky, but I cannot live like this anymore. It's a decision about quality of life that we each need to make.
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We haven't talked about surgery yet--every time I go to see colorectal, she can't see anything wrong because they are little tears that apparently heal really quick. So I guess that's good! The area is just so easily irritated. I'm thinking of going back to derm to see if she can help. I mean, it's skin, right?
Ovarian suppression was never mentioned to me. I suppose I definitely don't want it now, already having problems from estrogen suppression!!!
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gb2115-
That's good that they are just small tears and heal quickly. I had/have two larger ones at the front and back (common places for fissures and not indicative of something like IBD, which I have no symptoms of), plus many minor tears due to the thin skin issues. Surgery was helpful because I was getting horrible spasms from the pain (the internal sphincter goes into spasm when it senses pain). So, I don't regret the surgery. However, I am still not healed and am still having pain. I don't heal very quickly now and I should. I'm sure the ovarian suppression and maybe the Tamoxifen is the culprit since normally I am a fast healer and recovered very quickly after chemo, surgery, and radiation. I know not all oncologists agree with ovarian suppression, but mine was very adamant about it.
I'm glad you never went on ovarian suppression. It just causes more problems for people, it seems. I thought I was tolerating it well but apparently not. : (
I am thinking about seeing a dermatologist, as well. I'm assuming they do a full examine of the area or is it too painful? I have an appointment with another colon and rectal surgeon and I am not looking forward to being examined again. It just opens things up again! Ugh! I HATE THIS.
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