I had my endo in my belly button confirmed and removed by a BGSE specialist. I had a lot of bruising but am very pleased so far. My pain was minor compared to a lot of women on here.
What I would like to know is...how exactly does the mini-pill - progesterone only - work inside my body to help stop the endo coming back? I have taken the mini pill in the past for contraception purposes but this is not for that, this time as the consultant pointed out. I am 48 so nearing the menopause when I believe our oestrogen gets very low - which is the troublesome hormone in endo. The consultant has suggested I go on the mini-pill to stop the endo reforming. I seem to remember when on it for contraception there were risks as I am not the clinically ideal weight for my height, so not keen to add any risks to my life. I wouldn't be put off having the same surgery again, if necessary. Should I give the mini-pill a try?
So I am guessing progesterone works the same? Making my body think it is pregnant? Does being in that state reduce my own production of oestrogen, is that how it works? As oestrogen makes the eggs form, am I right?
Also, if and when I move on to HRT, again that is another combination of fake hormones, how do I balance my endo with my menopause?
Any good info on hormones would be much appreciated, I know Lindle is fab, but probably a very busy lady!!
Best wishes all endo warriors
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It depends is the best answer i can give you! .. if youve had progesterone only before and has worked for you in the past, its likely to work again. But some women like myself cant cope with progesterone, and actually my endometriosis is progesterone resistant. It in facts worsens mine! My Gynae told me to use combination pill but i thought i knew more than him and popped myself on mini-pill and well, lets say he was right!
The pill is the best of medical treatments out there, IF they work. Much better than Zoladex, which has worse side effects/risks. Talk to your GP about your concerns. My GP told me i could not have combined pill after 35 as a smoker. And questioned what my gynae would do after that! Subsequently the combined failed too.
HRT is hit and miss. Im currently taking HRT along with Zoladex. Is it helping, or hindering? Well im not suffering the severe side effects of menopause that i suffered on the last course of zoladex without HRT. But ive just had yet another bowel impaction and my pain is still there.
Im infertile, so i too was given the pill for medical reasons, not contreception. A good chat with your GP who knows your medical history is what id advice. Weigh up pros and cons of treating endo to not treating endo. With hormones its hard to judge. They can help some but not others!
Thank you so much for your reply. Gosh these hormones are tricky beggars!! I have tried the mini-pill in the past and as I was using it for contraception purposes it worked, I don't remember any major side effects, but of course this time it is not for contraception, so will I constantly be looking at my belly button saying to myself, has it grown back, is it growing back (endo lumps) .
It's a different mind set I guess.
I wouldn't mind having the surgery again if it was necessary, I was treated very well and have felt great ever since - really shows you just how much my hormones were affecting me without realising it. I had No libido before the op, it had been trailing off, for years, since the op I feel much more interested, and have had enjoyable relations with my husband, I would not want that to dimish again, but I do seem to remember any contraception I have taken in the past tends to lower my libido....
I will get to my GP and have a chat, I wonder what he will say....
The reason i know im progesterone resiliant is because i spot/bleed constantly on progesterone, and because im spotting, bleeding, my endo is doing the same and then im crippled. I tried the mini pill before my surgery. I gave it 3 months, so a good try. About 2 weeks before surgery it still wouldnt settle so i stopped it because i knew if i didnt they wouldnt operate. And bam. Within a week i was hospitalized with suspected appendicitis (my diagnostic lab a few months earlier only showed left side endo, i was free from disease on right side and had never had right side pain in my life). At surgery my endo was everywhere. Left and right! Deep infiltrating.
But hormones are difficult. The one good thing though is they can be stopped if they cause trouble and side effects go away.
It is a difficult decision. But my endo come straight back after surgery and i mean straight, hence why im now on another course of Zoladex! And it seems you have DIE *deep infiltrating endo* too, which is quite aggressive!
Another thing i want to mention. I know a lot of people on here talk about 'oestrogen dominance' and progesterone being the cure. I dont know what it is, but my gynae actually told me to go on the combined pill. I have no idea why, if something showed up in labs, or if he noticed something in me, but after doing my research and talking to my GP we decided to ignore him and go for the mini pill. Lets just say my Gynae said 'i told you so'. This makes me question this 'oestrogen dominance'. I think its much more complicated than that! But the one thing its taught me is to never ignore my Gynae and really, he knows best!
One thing for sure is that doing nothing wont help either. I was diagnosed with IBS at 17 and looking back have probably had endo for over a decade. Within that decade i have ate healthily. Having horses most my life means i have kept fit and active. Im within a healthy weight. I stopped all hormonal treatment when i was 21 due to a cervix ectropian. About 25 my symptoms started to worsen. I really shouldve gone Drs but had a busy lifestyle. Plus they was non-specific. They could happen anytime of the month! It then become acute last year causing PID. I may be unlucky, but one things for sure, you can say there isnt much i havent tried. 😂😂
Sorry i was ranting before .. I really do hope you find a solution to this peaky disease and i really hope it works for you! Please share if you do .. Im just frustrated because its come a point im trying everything for a second time round. But please do try. Dont ignore it like i did for years! Because ive now hit a point where nothing makes me better! Xx
No, no, please don't apologise. My endo is teeny tiny, well should be non-existent at present.... so I will have a chat and make a decision. I am so sorry you are having to suffer so much. Have you got any more surgery lined up to remove it all? Please feel free to chat on here, that's what it's for
ve had complex excision back in december just gone! Dont under-estimate this disease! Its ridiculous. Its partially my fault. As i said i was diagnosed 'ibs' at 17. My symptoms worsened at 25. I ignored them and i regret it! I was sexually assaulted at 31. The assault ruptured an endometrioma and upset my endo. Well not my endo, but my entire insides that had become somewhat normal *my bowel suspended, adhesions, deep infiltrated endo that had become normal for me as i had had it for so long*. It caused PID, which has set me on a path of no return. I just cant recover. I have tried everything from complex surgery, zoladex, twice, combine, progesterone! I suffer from bowel blockages on my fourth this year alone! Fatigue, chronic pain. I just cant control it! I wasnt well before the assault, but it was manageable! Now its impossible. So much so im still under gynae and my GP doesnt know what to do! I live on heavy painkillers and laxitives! It effects my social, romantic and working life! I cant just blame the assault! I had serious symptoms for 7 years i 'lived with'. Please make sure you dont do the same! It may seem like nothing now, but it might not be in years to come! Xx
OMG, you are one strong lady to cope with all you have and are doing!!
{{{big hugs}}}
Is there any chance you could see a totally different specialist and basically start from scratch and see if there is anything missing or perhaps reassess meds/treatment. A different opinion I guess? Have you tried different eating habits, do they help?
There was a programme on TV where the Dr came to live with families and saw their conditions from the inside out, so to speak. One lady had terrible pain, extreme fatigue, ME, if I remember correctly and other problems and had tried everything, lots of pain meds, etc... He took her back to scratch, changed her diet and meds, did blood tests etc... it was not an easy road and I think she nearly gave up, but she came through. And is impoving day by day and has seen a vast improvement overall.
I like to think there is always hope out there, if we can find it!
So from your op in Dec, the endo has just come back with a vengance, is that right?
Is it an endocrinolgist that deals with hormones? have you seen one of those?
Hi, I think the idea is that progesterone balances out the effects of oestrogen. It doesn't remove it, just lessens its effects. Many of us endo warriors are oestrogen dominant, so adding in some extra progesterone makes sense. However you are right that there are risks (which increase with age), so it's a case of using the least amount to get the benefit you need. That's why low doses are often recommended, e.g. Mini pill or Mirena.
At least this is my understanding. Someone please correct me if I'm wrong!
I'm 50 and have never been pregnant so I figured I could handle some extra progesterone. Also I believe I have other signs of oestrogen dominance, e.g. Recurring thrush.
Be careful with HRT as it usually involves adding oestrogen. That's of course fine if you have none at all (e.g. Due to Zoladex) but perhaps not wise in other circumstances. Personally I'm looking forward to the end of mine!
I have been on the mirena and came off it, I am wondering if I can remember the timing of that and when I started to see the lumps appear....will have to see if I can work that out.
I know it can be really tricky to kind of "play" with hormones, even the small amount of endo found in me has had huge differences on my mood/energy/joie-de-vive (sp?) so it is quite worrying if it will work, what if I don't try it, etc...
Yes, HRT is a whole 'nuther ball game, I'll worry more about that when I come to it, heard some horror stories of ladies suffering with their "privates" due to menopause....so HRT seems a good option to stop those issues.
Yes, I am happy never to have a period again as long as the rest of me stays the same, I am not sure it will work that way LOL.
I do have a friend that had the mirena, left it in for 7 years, changed it, left it in for another 7 years, think she is on her next round - meanwhile she went from her 40s into her 60th year and I don't think she noticed any menopause symptoms at all!! Such a breeze!
I'm on my fourth Mirena! They only seem to last 3 years for me. The dose gradually reduces and at that point my symptoms return. But for me it's still been a good way to control the endo using a relatively low dose of progesterone.
The menopause seems to be very different for each of us. So far mines manageable. There's no doubt I'm looking older but then I am. I suspect acceptance is as important as the hormones.
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