Dealing With the Lingering Effects of Medication-induced Menopause

Amy Gietzen avatar

by Amy Gietzen |

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Scleroderma comes with a plethora of uncommon and unbearable symptoms that may arise before or after diagnosis.

For the first five years that I was living with scleroderma, I didn’t respond well to oral medications, causing my disease to worsen. My skin felt like that of a snake, and it was getting harder to move around comfortably.

I was given the option to try cyclophosphamide, a type of chemotherapy that works by suppressing the immune system. The treatment would involve two rounds of 16 sessions.

I knew that the medicine could have some serious side effects and cause me to become sterile. My doctors and I spoke at length about this possibility. However, at age 25, slowing disease progression was more important to me than having children. So I made the decision to move forward with the treatment and hope for the best.

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Each session resulted in hair loss, nausea, and fatigue. My doctor split up the dosages to help mitigate the side effects, so I was having sessions every two weeks.

I hoped my body would loosen up and be in less pain after completing the treatment. Unfortunately, I ended up feeling no different, and my bloodwork confirmed as much. It took me some time to deal with the fact that I endured all those sessions but didn’t see positive results.

I didn’t realize the failure of a treatment would sting so much and make me feel like my body couldn’t do anything right. I gave myself two weeks to have a pity party, and then I began to consider how to move forward.

But in looking to the future, I never envisioned the hot flashes. I also never imagined that at 25, my menstrual cycle would suddenly stop and I’d go into medication-induced menopause.

Whenever I’d heard women talk about going through menopause and dealing with hot flashes, it sounded inconvenient and uncomfortable. What I experienced was much more severe.

The heat would consume my entire body, from the top of my head to my heels. I felt like my entire body could burst into flames at any second. The worst part was that the episodes would come and go, and their duration and frequency changed constantly. It got to the point where I was tempted to strap a fan around my neck to have cold air blowing on me wherever I went.

Over 15 years later, I’m still dealing with hot flashes. They’re milder now that I’ve worked hard with my doctor to manage them through medications and dietary changes.

Due to early menopause, I still don’t get my menstrual cycle and can’t have children. I often grapple with my decision to pursue that treatment years ago. It cost me the ability to have children and caused a slew of side effects, and it didn’t even help with my scleroderma.

I have always been a firm believer in living in the here and now. Deciding to try cyclophosphamide helped me learn what works and what doesn’t. It also taught me to find unique ways to deal with side effects. Who would’ve thought that cutting out caffeine helps with hot flashes?

With scleroderma, I’ve always found that you endure what you can, and the rest you learn how to manage. This was just another example of how I’ve done exactly that.

Note: This column represents one person’s experience with a medication. Because circumstances differ from person to person and not everyone’s experience will be the same, it’s important to discuss the potential benefits and risks of specific medications with your healthcare provider. 


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Ελενη Γιαννακακου avatar

Ελενη Γιαννακακου

Ειχα και εγω την ιδια εμπειρια με την διαφορα οτι ενω νοσησα απο σκληροδερμα στην ηλικια των 28 ετων και ο ρευματολογοσ μου συνεστησε να κανω την θεραπεια με κυκλοφοσφαμιδη 39 ετων. Υπηρξα τυχερη μεσα στην ατυχια μου διοτι προλαβα και εκανα τα παιδια μου πριν ξεκινησω την θεραπεια με την κυκλοφοσφαμιδη

Translation: I had the same experience with the difference that while I was suffering from scleroderma at the age of 28 and my rheumatologist recommended me to do the treatment with cyclosphamide at the age of 39. I was lucky in my misfortune because I caught and had my children before I started the treatment with cyclosfamide

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ramesh thapa avatar

ramesh thapa

Thanks a lot for this article. it is very helpful for me. I would like to know what dietary has been changed to manage the disease by author.

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Maggie Stalhut avatar

Maggie Stalhut

I'm 75, and was dx'd with CRESTS, SJOGREN'S, & RAYNAUDS, in 2007, along with a host of other illnesses, including GENETIC HYDROCEPHALUS. Since then, I have a 360°, C3-T2 neck fusion, with front cage. I've also had 9 Surgeries, since 2018, because My SCLERO has been attacking My inside Connective Tissues., along with many other issues.
I accept what GOD has placed on My Path, towards His GLORIOUS KINGDOM without question.
I've learned to LEAN ON THE RIGHTEOUS ARMOUR OF GOD, without question.
And, I use Each Day, to 'WITNESS', and PRAISE GOD, and THE BLOOD OF THE CROSS, THANKING GOD, for EACH BLESSING, GOOD or BAB, since EACH ONE, GOOD or BAD, is a "LESSON LEARNED".
Sincerely, Maggie Stalhut

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