I’ve finally had an appointment with the gynaecologist specialist today and was very relieve that he finally listened about my endometriosis and agrees that it is the cause of all my symptoms. I explained that I suffer during ovulation and mendtruation but that heavy painful periods are not the biggest problem to me. It’s the headaches, vomiting, hot sweats, and gastro flare ups that are crippling to me. When I ovulate I have flare ups where my stomach looks 8 months pregnant and I can’t stand or walk through the pain, I have no option but to get hubby to help me lie down as best he can in a position where I can breathe through the pain for however long until it passes. And I now take laxatives every single day as I have no option left now with how severe the constipation is. I am so relieved that at last a doctor didn’t question it and just said straight away that’s it’s the endo. However, he was pushing me to have the coil fitted or ablation surgery. I do not want the coil but he’s really trying to push it that way. Can anyone give me their opinion or advice on this. I hate the thought and I can’t see how either option would help with the potential damage that’s already done. Would either take the symptoms away?? The vomiting, headaches, faintness, stomach flare ups etc? Or are they treatments to just slow down the endo’s progression? He didn’t really understand my question, but I don’t want to be crippled in pain anymore or having to live on laxatives.
Thankyou for any advice or opinions 😁
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TReyno
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Hi I am going to follow your post re the ablation. I have adenomyosis and not endometriosis and the health professionals all think I should have the coil too, I refuse, I don’t want anything else out inside my body. I had a bad time with the implant and injection and enough is enough. If you don’t want it then stick to your guns so to say as it’s your body.
Did he give you much advice about the ablation? I am interested in this as that’s what I am away to get next once I stop putting it off
He’s given me time to research and learn more about the options. He veers towards the coil as it’s less invasive than ablation which I understand but like you, I don’t want anything else in my body! All other contraceptions are off the table at this point. He feels that ablation is not a great option for me but I feel he was basing that on my age and the fact that I only have one child, even though I strongly told him that I don’t want any more children and just want to feel well! He didn’t explain much, but did give me a leaflet to read about it, just kept saying that although it’s very rare, pregnancy following ablation would be very dangerous. Again, I don’t want any more children so that’s not a worry to me. He said the final option is a hysterectomy but again, my age puts him off. My worry is that, from what he explained, these are methods to slow down further progression instead of helping with the current problems. Obviously I want to slow it down, but right now, some of my issues are so severe I feel they need addressing. I think we just need as much info as possible to arm ourselves with, so we don’t get confused by what we’re told
Yes like you hysterectomy is the final thing for me after the ablation which I believe only works for around 2 years. It’s like they don’t listen to you at times isn’t it & why would you want a child when you are having so many issues. That’s the last thing on my mind x
Hi I get the same symptoms to not as bad as u but get really stomach flare ups I was giving the coil and depo injection which just helped with stopping bleeding but I still have all other symptoms I would recommend not getting them the coil caused me to be in for pain and was painful being fitted and taken out. I am have pushed for a laparoscopy which I go for next wed.
Thankyou for your reply, that’s what I’ve been thinking, it’d stop the bleeding but not the other symptoms and I find the other symptoms much harder to manage. Perhaps I should stick to my guns and refuse it, hopefully they’ll have another plan
Hay I have suspected endometriosis and diagnosed adenomyosis and am waiting on a laperoscopy, I've also been put forward for the ablation and can't wait, I was first practically told I had to try the coil even when I refused, was pestered until I tried the coil and what do you know it aggravated my adenomyosis (I believe) i was in agony until it was removed after only a month but was not trying it any longer but everyone is different so it's your own choice don't let them push you into trying anything , all I know is I wished I'd stuck to my guns and refused again after the 4th or 5th time of them saying it will ease the pain, even when I went back the (gyne) told me it can take at least 6 months to start to work, I wasn't keeping it in any longer luckily my Dr is fantastic and agreed with me, hope you make the right choice for you, personally i can't wait for the ablation to see if it does work but if the adeno is deep infuriated it may not work but right now I'd try anything to take my everyday pain from me, like AllthatGlitters says a hysterectomy is the last resort for the adeno but if that's what it takes then I'll take that, it's what I wanted first off just to skip the rest but I'm only the one in pain not the gynes 🙄 YOUR CHOICE no-one elses xx
Thankyou for your reply. Yes, everything I’ve researched and everyone who I’ve asked about the coil says exactly what you have. I’m definitely going to stand by what I told the gynae, I do not want it and do not think it would help in my case. Everyone suffers so differently but I think they get stuck on their own ideas of our worse symptoms, the ones they think are the worst. I will have to try to be more assertive and make my case to him that I do not need the bleeding or pain to be stopped, I need the other symptoms dealt with and I desperately need the constipation to stop. I hope you get the treatment you want and need to help you!!
If you haven’t already, visit Nancy Nook’s Facebook page. Ablation is not the gold standard in treatment and the coil is no kind of treatment at all! Good on you for researching and questioning ❤️ It’s not easy to have to do that as well as being in that much pain.
If you have surgery then it needs to be excision only and if that means changing consultants to find one that does it then I strongly recommend you do as you should be in more knowledgeable and safe hands. Surgery is difficult as it is and it’s even worse if it’s only a ‘half’ job done by a gynae that is not an endo specialist. Unfortunately the education in endo in the medical world is not great!
My understanding is that endo deposits are like garden weeds which put out microscopic spreader roots. So to remove the endo the surgeon needs to excise the visible endo deposits PLUS a margin of what looks like healthy tissue that actually contains microscopic endo. Ablation just planes off the top layers of endo leaving the fineroots. So the endo regenerates (like a garden weed that you haven't dug out properly.) So excision is the only viable option.
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