I asked a month or so back for some advice re my daughter and her post lap treatment options - she was advised to have the hormone injection but we have resisted due to her young age (19) and she was put on the pill she has not been getting on with it or the painkillers she was prescribed.

We have overhauled her diet and she is taking supplements, she had a colonic irrigation as had become so constipated with the pain killers and she also decided to stop all meds including the pill and is feeling so much better, she has a tens machine and has also had Laser Light Therapy. What I'm wondering is if there is anyone else who has chosen to go down this route and if it really is necessary to have a hormone based treatment or can she carry on without it?

She has an MRI this afternoon to see if they can see if it has grown back (though I've heard mixed opinions on whether Endo can be seen on an MRI scan) and her next Gynae consultation is tomorrow afternoon.

would love some feedback PLEASE!!

Andrea x

6 Replies

  • You sound like a really amazing mother :)

    There will be a lot of pressure to go the hormone route but ultimately it is down to her - if the pill doesn't agree with her that is probably an indicator of how her body responds to synthetic hormones. Sometimes the exact right combination and dose of hormones is what is needed, and sometimes it just doesn't work. She can always try them and then stop, but with things like the depo provera or the implant, you are signing up for several months of the thing and there's no real way to reverse it if things go wrong.

    Personally I had terrible symptoms (depression, hallucinations, relapse of my neurological disease, etc) on the pill - it seems to be more common in people with endo - and I've just decided that synthetic hormones are not for me. Everyone is different though.

    I don't know much about MRIs for endo but laparoscopies are absolutely the gold standard treatment - you need a good surgeon who knows what they are looking for to physically get in there and have a look, otherwise I'm sure it's easy to miss small lesions.

    I really hope she has more success this time around!! x

    P.S. Is she under the care of a pain clinic? They should be able to help with different pain medication strategies.

  • Hello and thank you!

    She had a laparoscopy in November and was treated for endo which had fused her uterus and bowel together and after that had about 2 weeks pain free and then it came back and really took control of her. She was missing so much work and in and out of hospital (the last time for pain management) but she seems to react to any painkiller stronger than paracetamol and ibuprofen so decided to do without. We suggested she give her notice in as she has a very stressful job and the pain was just taking over her life and the stress was making it into a vicious circle however her manager has been lovely and said she can have her job back when she feels better and I think the combination of diet/ more natural pain relief therapies and the supplements have already made a difference so I think she will take a month off after her notice and then plans to go back. I'm just concerned if she doesn't have any hormone treatment does it mean the endo will grow back quicker? X

  • As far as I know yes the hormones will slow the growth or put it into a sort of dormant state - or at least that is the theory. It seems to be the monthly fluctuation of estrogen that causes the lesions to grow so it would make sense that being in a hormonally stable state would help that. However I don't know how many studies there are to actually support this theory. In any case, if she wants to pursue it, it could be that she needs a different kind of pill - maybe one that has a high ratio of progesterone to estrogen (or possibly a progesterone-only pill) because they seem to have fewer or less severe side effects in general. If a progesterone-only pill works for her that might indicate that the depo/implant could work too. This is just my guess though, I'm no GYN!

    I use bioidentical progesterone cream (from wild yam or soy) and that helps for other PMS symptoms although not for pain.

    At the end of the day even if she is on hormones the disease will still be there, the hormones will just mask the symptoms. Having said that, sometimes stopping the periods can make the difference between having a functioning life or not. Only she can decide what her intuition is on that.


  • Hi would just like to advise that if the hormone injection you are talking about is Zoladex/Lupron/prostap, then these should not be given to anyone under the age of 23. This is nhs guidelines. This is because it affects bone density . You don't reach full bone density until the age of 30. So I would be wary about having these. Is your daughter being seen by a general gynaecologist or a endometriosis specialist from the BSGE list?

  • Hello. Yes that is the reason we have declined the injection. She is being seen by a general gynae who is very lovely and supportive but am going to see how tomorrow's appointment goes and then ask to be referred internally to a specialist as our local hospital is a specialist endometriosis centre. Fingers crossed.

  • Good luck . If she can see a specialist that would be great. She will recieve better treatment from a more experienced and more knowledgeable person which makes so much difference.

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