Hair loss- any suggestions?: Hello, I was... - Endometriosis UK

Endometriosis UK

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Hair loss- any suggestions?

D1245 profile image
22 Replies


I was diagnosed with stage 4 endometriosis around 4 years ago and I’ve had every symptom in the book. One I’ve noticed has escalated a lot more recently is hair loss to the point that as I’m leaving the shower I can pick up a ball of hair the size of my palm from the drain. I’m noticing balding patches and it’s causing me a lot of upset. I know there are much more difficult situations with this illness (I’m one Fallopian tube down thanks to it!) but this one takes the cake as my hair is the one thing I’ve cling onto throughout all the surgeries, the round of ivf last year and months at a time being really unwell (I’ve gained weight, spots, and don’t look like myself at all anymore)

Has anyone experienced this and if so, what have you used/ done about it? Any suggestions are welcome! :) thanks for reading. X

22 Replies
MVR1 profile image

Castor oil is a great therapy for hair thinning/ loss. I’ve been using it for a long time just to keep my hair healthy! Use it once a week, wet your hair and then towel dry, apply all over and leave it on for 1 hour - 3 hours. It’s pretty thick so you will need to do a few rounds of shampoo to wash it out 😊 it is amazing!

MVR1 profile image

Also for skin problems, pure aloe Vera gel is really good! If you can get it straight from a aloe Vera plant then that’s even better! Natural and has no chemicals/ fancy ingredients that can ruin the skin :)

D1245 profile image
D1245 in reply to MVR1

Thank you for the suggestions- I’ll give it a go! 😊

MVR1 profile image

Pure cold pressed organic castor oil is the one, i get mine from Amazon 😊

riddo11 profile image

I don't know if it's connected to endo but I've had about 3 periods of losing hair. Luckily for me I have quite thick hair so I've never noticed bald patches (touch wood).

However I would say that if seems to get better after 4 to 6 weeks and happens to me every 18 months or so.

I tried to keep my hair up and not brush, wash or straighten my hair more than I need to.

It eventually seems to stop. Not sure if its connected to endo but thought I'd share x

D1245 profile image
D1245 in reply to riddo11

Thanks. I’ve tried to lay off it with heat etc to see if that helps x

bluebug profile image

Thing is it depends on what is causing your hair loss on what you should do.

Things like oils and over the counter products will do SFA if the issue is internal, and are simply a waste of money. They will also delay you seeking a proper solution. Avoiding brushing or combing your hair will just delay you collecting the fallen hair but it is still coming out.

If it's stress or lack of nutrients e.g. iron, vitamin D then if you decrease your stress or supplement the missing nutrients at the right levels then in a few months your hair will grow back.

If it's hormones then it depends on the hormone(s) what can be done, and you will need a doctor's help in rectifying it.

If it is genetic like female pattern baldness or an autoimmune disease like alopecia, then you need to get specialist, a dermatologist's, help asap to prevent more hair loss.

Also all medications including pain killers as well as hormonal ones like the pill, mirena have a side effect of hair loss. In many cases this side effect is very rare. Once the medication is stopped hair should grow back.

The big problem you have is trying to identify the cause as the NHS are generally as useful as chocolate teapot in helping you do that. Even if you have something as simple as anemia causing hair loss most of the time the iron level needed to avoid it won't be reached on the NHS as they don't tell people to supplement long enough. If medication is causing the hair loss then the big problem you have is getting believed as many healthcare professionals will swear blue to your face that the medication that they prescribed for you isn't causing this rare side effect.

mrskiki profile image
mrskiki in reply to bluebug

So true, one of many things I have learned from the thyroid forum since hypothyroid diagnosis is to get vitamins tested before supplementing and get used to doing your own fingerprint tests to monitor yourself as the GPs often don't understand or have time to understand vitamins or optimal ranges, amongst a lot of other things ....

D1245 profile image
D1245 in reply to bluebug

Interestingly went to give blood after posting this and was told my iron levels were low so this could be it. Thank you x

DalmatianGirl profile image

Hey! I had the same thing when I was first diagnosed, here are some things that helped me:

Washing your hair with rice water once every two weeks (the cloudy water you get when you boil rice)

Olaplex no.3 every week

L’Oréal biotin shampoo and conditioner (in a pink bottle, or another biotin shampoo)

Try to reduce heat where you can!

My hair is so much better than it was because of all this, I hope that helps!

D1245 profile image
D1245 in reply to DalmatianGirl

Thank you x

Narcica profile image

Hi D, I would recommend you to start taking collagen powder, I am using Peaksupps (I buy it from Amazon)for years and it’s significantly reduced my hair loss and my skin is soft and glowing. You can add it to your drinks. Start it with one scoops for about 2-3 weeks then double it, then triple. Also pure castor oil; I am leaving it overnight with a shower cap and deep cleanse shampoo and nourishing conditioner next day. You can do that once a week, I am only doing it once a month now. All the best x

The black shirt hair is the fresh growing hair. My hair was bleached and toned 2 weeks ago
Sabrinacolada profile image


I am having the same thing too. Bloods showed anemia/ low iron which can be a very common source of hair loss. With endo we are bleeding etc so much more and heavily. Stress /chronic pain from endo just leaves such high cortisol it can cause hair loss too. I spent an awful week and a half hospitalised so I think laying in bed so much possibly weakened it. Also with endo there is high oestrogen but the pill / progesterone etc used to reduce this can have this as a side effect.

I'd say begun with the basics see your gp. They can run bloods check iron, vitamin levels etc at least these are things that may be remedied.

I agree with bluebug without blood test it could be wasting money on topical products. But i've always been a fan of mixing 50:50 caster oil to coconut oil. Scalp massage but putting if from root to tip. Leaving on a few hours before rinsing. Couple of times per week. Not promosing any miracles ( although caster oil supposedly helps regrowth) but hair definitely feels stronger and shinier. Other then that just good nutrition. Plus I am about to get mine cut so it looks a bit thicker again.

It's sad it was so long and luscious before so I completely understand what you mean.

Sabrina x

D1245 profile image
D1245 in reply to Sabrinacolada

Thank you, I’ll speak with my gp x

Washington1 profile image

Hi there. Sorry to hear you're experiencing so many symptoms. I was experiencing a significant amount of hair loss a few years ago and went to the docs and asked for some blood tests. A week later I spoke to someone at the surgery who said my results were fine. However, I just felt something wasn't right so asked to have a print out copy, which I was given. But I left the surgery and realised I didn't have all the results, so went back in and asked for the rest. I then discovered that I was really low in ferritin (iron stores). The doc then called me back and put me on iron tablets. I didn't get on with the tablets they gave me, so bought some gentle iron capsules from a health store. Within a few months my hair loss had significantly decreased and now my hair is back to being pretty thick. Just to say, it is worth getting blood tests done, rather than just try iron tablets as, if you have enough, then an iron overload can be serious. I would also ask for a vitamin B12 blood test as a B12 deficiency can also result in hair loss.

I've noticed mention here of using Castor Oil. I know that does work for some people, but for me it made things worse, so just use with caution. Weleda do a Revitalising Hair Tonic that works for some people.

I hope you start to feel better soon. xx

D1245 profile image
D1245 in reply to Washington1

Thank you. I think it may be iron levels so I’m looking into supplements as part of it- hopefully this works! X

RedA28 profile image

Have you had covid or any other infection/illness in the past few months? That can cause hair loss, generally shows up 2 or 3 months after the event. Just wanted to mention this as this is what has recently happened to me - not covid but a burst appendix and post op infection back at the beginning of June that is causing hair loss now. I went to GP and he tested iron levels, thyroid and a couple of other things and all came back clear so he thinks this is the culprit.

D1245 profile image
D1245 in reply to RedA28

I’ve had Covid but don’t nothing else (that I know of). I’m thinking it may be iron levels so going to try supplements and see how I get on x

EndoSuckss profile image
EndoSuckss in reply to D1245

Covid can lower your vitamin D levels and cause hair loss - it's becoming more common that women are losing hair after covid so hopefully it's only short term x

Fipp profile image

Hello D. I have suffered with hair loss , bald patches… it can feel quite distressing , like another layer of loss on top of all the other loss these diseases bring up . I’m sending you a tender hug x I discovered that biotin really helped me and this was before I went on hrt. You may not be at the hrt stage yet , which also seems to have helped also with many things. But yes definitely biotin, b12 helped me. I received no support from docs re this despite referrals -like I should just accept , as with all my symptoms which were gaslit re endo , adeno!! Nothing new here . I found that biotin encouraged new growth and for 6 months I had a crown of new growth but soon it began to grow and thicken, including my bald spots, felt no side effects from it. I feel mine was definitely hormonal imbalance which was dismissed/ auto immune . I also washed my hair with only natural shampoos with little chemicals very gently as I realised I was a bit rough with myself causing more harm, gently brushed but not as much and all this made a doggy over a year or so. Really hope this helps you too x

D1245 profile image
D1245 in reply to Fipp

I’m sorry this happened to you too, it’s a horrible feeling. Im going to try some supplements in the first instance so thanks for the recommendation x

Chanzi profile image

Seamoss, very good for anything. A quick Internet search will provide you with information on how to prepare. It's changed my life!

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