Endometriosis +/- Adenomyosis: does anyone else experience cold sensitivity?

[MangoStickyRice]

Good morning lovelies!

I just wondered if anyone had any sources that support the presence of cold sensitivity in those who have endo/adeno. I did see a study a while back but haven't been able to find that one since.

I have been diagnosed with adeno and am awaiting a 2nd lap in a few weeks to determine if endo is present - my consultant thinks it's highly likely. I have always been aware of changes in temperature as I'm a highly sensitive person anyway (HSP) but in recent years I have struggled continuously with staying warm in a shared office. I have even been known to have hot water bottles and wear a coat and fingerless gloves in the height of Summer which has been met with laughing, teasing, unhelpful comments or other people thinking I can just being difficult (yes, I'm aware that's a separate issue to address with HR).

If anyone has adeno/endo and also struggles with this I would love to know. Also, if anyone has any links to info or studies that support cold sensitivity as a symptom I would love to read these.

This platform has been so helpful in my journey so far and I appreciate every one of you. Thank you in advance.

[Sunset-lady]

People were laughing at me yesterday as I sit (right now) on my heated blanket. I have a hot water bottle, I wear vests and huge cardigans that look like sleeping bags. I have log fires all year round and showers 3 times a day as I'm chilled to the bone. I wear fingerless gloves to type too! Firstly it's a well known peri menopause symptom - a lot of women go freezing. I also think it's worth having your thyroid tested (properly not by the NHS). I would also drink ginger and turmeric gold tea and eat small meals regularly. I have stage 4 endo. I've been freezing all my life x I'm a different person in hot weather but even then I sometimes get goose pimples if it's not boiling.

Screw the haters at work. Bring a heater in. My boss used to go mad at me, but I didn't care. People think you're used moaning about the weather but it's more than this. It makes me miserable being in cold places. I NEVER holiday in the UK because I need heat. Good luck lovely x I see you and share your pain xxx

[MangoStickyRice in reply to Sunset-lady]

Hi thank you for your message. Thank you for your advice and I can definitely relate regarding goose pimples in warmer places.

It's frustrating isn't it! My husband has MS and struggles with high temperatures so it can be difficult to get the environment right - we also work together so putting a heater on at work can cause tension. Thinking of getting a heat pad for my office chair and/or one for my feet. My feet are so cold at work that I end up getting pain in them and then eventually can't feel them at all until i have walked around a bit. I do have one of those feet hot water bottles - the one that's like 2 slippers put together with a bottle inside. Fingers take a hit too and even with the fingerless gloves, I can say that I have struggled to type sometimes even in warmer months.

I'm hoping there's some studies out there that I can use to explain why I am so cold all the time. If it is related to adeno or endo at least I have an explanation and I feel like people will stop commenting on how 'silly' I am wearing so many layers if they know its due to a chronic condition.

Hope you have some warm holidays planned!

[Sunset-lady in reply to MangoStickyRice]

I think it's probably connected to thyroid. Although end is blood tissue so probably a lot of our blood is used for this which may have normally been used for keeping us warm x

[endotheline]

strange you say that!!! I am always cold (recurrent endo here). Always have multiple layers on. In fact one of my best friends got me a surprise gift last weekend… a thermal vest!!! What an amazing invention that is I can tell you!! I hadn’t thought it was linked to my endo however I’m starting to suspect I may have an interactive thyroid. Once I’m fully recovered from my recent surgery I’m going to get a test to find out.

[Fuchsiafairy]

I don’t know if there is a link but I have been diagnosed with reynauds since I was 14, so just afew years less than I’ve been having hormonal cycles, could be linked.

It is always harder to warm up than it is to stay warm so the advice is always to keep warm with layers upon layers of clothing. I wear socks which have toe fingers, so each toe is encased and then a second normal pair of socks over the top. Thermal long sleeve tops under other tops, thermal leggings under everything. Look for natural fibres as your top layer, wool, cashmere merino wool. Also silk as middle thin layer. I do two delicate machine washes a week! Make sure you have a really good coat, down coats are amazing. Uniqlo do great thermal wear and down coats. I also like long drapey cardigans with kind of a built in scarve I can wrap around.

Also if you have a desk job, sitting down in one position is a nightmare. Honestly might be worth getting one of those under desk cycle s often advertised for older people, but is all about keeping your circulation moving. Hands are hard to keep warm with hand on mouse and keyboard. I think if you can keep blood pumping throughout the day will help. I apply hand cream a lot during the day and really massage it in hard to get the blood flow to the tips of your fingers.

Also Hydration is Really, Really important. Take electrolytes with your water. I think that when my body is really hydrated all the cells are plump and blood volume is good, and this helps with pushing blood around.

I’m currently looking into more rechargeable heated wearables. I have a heated stomach belt I wear for pain relief but I’ve seen rechargeable heated shoe insoles and a heated gillet!

Good luck