cup of tea and advice

Hi an coll59, new member endo for 14 yrs, two cats tc and scamps. Waiting on gynea appt next month. So far no treatment has worked for me although had surgery,misdiagnosed with depression for ten years and made hair fall out. Looking for advice mb a cuppa with like minded person in my area. Pelvic pain fever and chronic fatigue at the moment struggling but have good days sometimes but now have all my hair back.

4 Replies

  • Where do you live? I'm in north London and I've recently realised how much I need to speak to others who really understand Endo. I've signed up to a Facebook group for central London endometriosis. They hold socials/picnics etc. If you click here you'll be able to find a local support group:

    As for the hair loss and misdiagnosis of depression - I'm recovering from PTSD due to unrelated matters and weaning off antidepressants. I don't know if it was the experiences I went through or the drugs but I also had a problem with hair loss. Like you, thank the Lord, it's now grown back and I'm taking care of it in the hope it will prevent it happening again. A massage therapist told me my scalp was incredibly tight, probably due to the stress or meds. She suggested massaging it daily. I bought a boar bristle brush and every other day I massage my scalp with it and gently brush my hair from roots to tips for about ten mins. It may be a coincidence but my hair is now growing stronger. Without a doubt it relaxes my scalp from the tension. Worth a go if you have similar symptoms.

    For fatigue, I've found b vitamins and a good iron supplement useful. It's worth discussing this with your dr. Xx

  • Hello there Poppy, thanks for the reply,

    I live in Wirral which is unfortunately miles away near Liverpool. I also have ptsd from horrid attack which I wont go into. Had anti depressants for a long time coupled with no hair,not good for self esteem.Getting asked at bus stop by stranger how my chemos going and people not talking to me in home town scared to ask...they say. It got better when I stopped the pills they made my skin really itchy and have scars now, but put up with it as my head was so bad and did not know had endo until 2yrs ago. So had excision of endo but scared of all hormone treatments as hormones have done damage in the first place.

    Have gynea appt next month, researched all my options tried most of them already and has made it worse.Like depot hormones hysterectomy the pill the coil I have tried them all and they just dont work.I used to live in the Columbia Hotel when I had a record deal years ago so remember high times in London (and the bad).

    I have been trying the B12 and iron but stopped as was caring for mum, will start again with them nw you have mentioned it again. Family been pressuring me to have hysterectomy been going along with it as not sure what to do and is hard as mum is terminal with cancer so I dont feel that my endo is in any way important compared to her. Had to stop caring as collapsed through exhaustion.. really good to hear from you.I tried extrivex shampoo from drs very good and you can get it on perscription helps the hair. So disappointed with treatment options really dont help me personally.I would love to hear more about your experiences. How long have you known? Nearest endo meeting is Manchester for me will try when am well enough.

    Check this article out on you tube:

    endometriosis quality of life & productivity fertility & sterility 8/11 video interview

    Sending you positive sunny vibes


  • Hi Coll. I just wanted to say sorry for not replying. Endo is really bad at the mo. I'll private message you as soon as the worst is over Xx

  • In the meantime, I found this newish looking Facebook page. I can't post the link for some reason but search for Wirral Endometriosis Support Page on Facebook and it should come up. Looks like it's this woman who's started it:

    Hopefully they'll soon be organising meet ups in Wirral rather than just Manchester. Certainly worth getting in touch! Xx

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