Is anyone not on any hormonal treatments? - Endometriosis UK

Endometriosis UK

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Is anyone not on any hormonal treatments?

NoshB profile image

Sorry I keep asking annoying questions but i dont seem to be getting any answers from my GP's or Gyny and Im fairly new to Endo.

So I was wondering if anyone does not take any form of hormones for their Endo and how they cope without them? im thinking some hormones can make you worse or the side effects can be as bad as the pain.

Hope everyone is well today


14 Replies

I do take hormones. I have been taking Yasmin (the pill) for the last five years. For the last four years I only have a break every 4 months or so. Since last October I have not had a break at all. My symptoms are now managable. I still have pain on intercourse and become very tired. I am very reluctant to try anything else as i am very concerned about the side affects.

I feel that you have to have a good relationship with your doctors, I don't trust mine and this has made me very anxious about trying the things they suggest. It is such a personal matter. What works for me may be useless for others. Research any treatment and weigh up the potential pros and cons. The scare stories may put you off, remember the bad stories are usually the ones that come to light first.

Sorry if i haven't been much help.I wish you all the best x

i don't take any now (since february) and i don't miss the side effects.

i decided that i won't know unless i tried it - so i did.

After having lots of drugs and trying out the most suitable etc it was nice to not have any, just to see what it's like now.

so far, it's manageable, and it's good to see how i am without something masking symptoms/causing more symptoms.

i am seeing a herbalist and i think this keeps me balanced and ok - or would i be without it?

am able to work and although periods have been knocking me out (fatigue) they haven't been as bad as they used to be.

i also follow an endo diet. am not 'my old self' and not sure i ever will be but i feel ok and didn't like how the pharma's mades me feel.

what's happening inside? who knows... but for now i'm doing ok :)

Becboo profile image
Becboo in reply to chickpeajones

Just about to start an endo diet. Has it made a big difference to your symptoms, fatigue etc?

NoshB profile image
NoshB in reply to chickpeajones

Hi Chikpeajones, glad your doing ok!

im doing the exact same as you and im going to try n stick to it i think the diet does help because i seem to get the most pain when I eat wheat, dairy, meat etc. I think natural methods do work they just take longer to work but the benefits last longer and are overall better for our health.

Let us know how you get on! I am still trying to get back to my old self too and even better and im not goin to give up!

Im sure you will too!

N xxx

I didn't have hormones at all for over 2 years and they were the worst few years of my life. I know it sounds dramatic, but it was awful. Due to the pain, bleeding, and fatigue, I ended up having well over 25% of the year off work ill. If I wasn't TTC I would be back on the Depo in the blink of an eye. There were side effects (mostly frequently bleeding) but nothing compared to what I have to go through with the endo.

I have just finished 3 months of prostap and for me it's been brilliant. Obviously not all things work for all people all of the time but if you aren't currently TTC then definitely consider working your way through the pills to see if there is one that helps you x

hi there

I am not taking any hormonal treatments. I had a mirena coil in and I asked my GP to remove it 4 years ago. I now follow an endo diet rigidly and I also do daily sitz baths and castor oil packs and I feel great and my symptoms have improved a lot so I think my body is self healing - I have one bad day of pain and exhaustion but otherwise I'm fine the rest of the month and can live life as normal and I have zero pain or side effects.

hope this helps


NoshB profile image
NoshB in reply to NinaR

Hi thanks for your reply, just wondering what diet did you follow and what is a castor oil pack?

I would really not like to take any more hormones!

N xxx

hi N

the diet is quite extreme. the main goal is to remove hormones from your diet as the endo grows / feeds off oestrogen. So a diet that reduces hormones is a key goal. this means no meat or chicken, getting your protein from veg and fro fish sources. it also means no dairy foods at all as sadly cows have hormones and you eat them when eating their milk or dheese. I replace milk with oat, rice and almond milk all of which you can buy in waitrose and other supermarkets. also no soya produce as soya "mimics" oestrogen.

this die naturally makes you add more healthy foods like veggies etc and so yo will feel really well.

the other big change I made was to remove all processed sugar from my diet as sugar can affect the way the liver and pancreas work and you need these two organs in tip top condition to heal from endomitriosis.

what I can say is I feel like a new woman after 7 months of this diet and thus last month i had very little symptoms of pain and i have chronic endo. I stick to the diet 90 per cent of the time ie if out for dinner I may eat red meat at a friends house. but the dairy is something you should really try to remove as it will impact your pain levels and inflammation levels immediately.

A castor oil pack is a piece of unbleached cotton that you layer on some castor oil ( organic) and you place this cotton across your abdomen covering from just under your breasts down to your public area. you then wrap some cling film around to hold the cotton in place and then place a hot water bottle on this for one hour. you do this 3 times a week except the week of your period. it is nice to do before bed. once the pack is finished, take It off and rub the excess oil off with a towel. you can then put the pack in a plastic bag and keep in the fridge to keep using it for about 30 uses before you need new cotton. keep topping up castor oil so it's wet but not drippy....the oil seeps into youre body and helps detox your body and heal your liver and is also said to help with adhesions from endomitriosis. you can buy the oil and the cotton from nutrigold website.

it may sound weird but I promise it works!!!

feel free to ask me anything are taking to someone who now doesn't even take pain meds!!

NoshB profile image
NoshB in reply to NinaR

wow this is amazing! this is exactly what i want to do as i take bad effects with hormones, pain killers and orthodox medicine in general. Im pretty much sensitive to anything and the doctors still keep giving me horrible medicine that makes me worse and feel even more depressed!

Goin to look into the castor oil pack sounds interesting!

What were you like before the diet and what was it like for you being on the coil? Did you have a lot of pain with endo?

N xxx

NoshB profile image
NoshB in reply to NinaR

Hi Nina, sorry I am so confused I went on thw website and im not sure which if the castor oil products i should purchase, theres 3 different ones, should i buy all of them?

Re castor oil - you just want a bottle of organic castor oil which you can buy anywhere. same for the unbleached cotton cloth - amazon even sell them.

re diet before and after. I have had transformational changes - pre diet - I was out of work 4 days a month with the pain and bed ridden, I was moody, bloated and had major fatigue. within 3 months of the diet changes my fatique is gone and my symptoms and moods are much much better.... this month I had a half day of pain and otherwise a pain free period and everyone thinks I've lost huge amount of weight but Its the reduction in bloating and inflammation that they are noticing. my energy is through the roof and I am being told how vibrant and well I look! I am like you - I don't do traditional meds. I have had two laparoscopies for endo and this time I am determined to heal it. my view is that cancer patients change their diets so their body can heal so we as endo patients can do the same thing.... I used to suffer severe constipation and needed help to go ie movicol, now I have 1-2 bowel moves a day with ease....the difference is huge.

a great book I read last December that made me really change my view in diet is called Cellular Awakening by barbara wren... if this natural healing route appeals to you then read it.

Nina this is so encouraging to hear. I am about to embark on an endo diet as I did a very similar diet some years ago for Candida, and felt amazing. I am so tired of feeling tired all the time and whilst the diet is tough think it must be worth a go. Good to hear it took about three months for you to notice a difference, it will help me to persevere and thank you for the book recommendation. Any other tips would be very gratefully received.

You're welcome Becboo. The other tip I think to help heal endo is to carry about any activitiy that helps increase blood circulation in your abdomen. The logic being that in order to heal, one needs healthy blood circulation in the damaged area. something most people don't notice is their breathing patterns and state of relaxation. if stressed or breathing shallow - then it could be that the lower abdomen is not getting ample blood flow. it's proven that when stressed we go into flight or flight and this tells the body to prioritise the outer limbs and be ready to our abdomen is not a priority. I used to read about stress and endo but I didn't understand the health link. Now I do - so doing anything that leads to deep relaxation is great for endo sufferers. So is anything that stimulates blood flow and circulation. So things liken

- exercise

- hot and cold showers - start with hot shower and then turn water to as cold as you can bear for 2 minutes. then back to hot again. end on the cold shower after standing in it for 2 minutes....this really gets circulation moving and helps you feel energised.

- Sitz bathing - where you have two tubs - one full of hot water (as hot as you can bear) one full of ice cold water - lower your abdomen into each for 2 minutes, starting hot first and alternatie 3-5 times. Do this TWICE a day. you will be amazed by what this you feel things going on in your abdomen as if it is waking up for the first time.

Endo is hugely stressful and stress and pain = reduced blood flow to the area of our body that needs nourishing healthy blood flow to self heal.

I had my endometriosis 30 years ago. They told me I would not have children and I had just got married. It was a shock. My husband and me decided I did not want the side effects of the drugs on offer, so I did not take them. I have a 25 and 24 year old! So the doctors are not always right. After the pregnancies I was ok untill the menopause, which started early at 44. I was on HRT and now at 54 I am out the other side no bleeding and no pain.

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