I have deep infiltrating endo, which according to the scans, has really made itself at home, including screwing up my left fallopian tube and now being pretty keen on my left kidney's blood supply. Having seen an endo surgeon, he said, from looking at my ultrasound results, it is likely that given I am 40 and dont want any kids, the best bet (pending a laparoscopy to confirm), a hysterectomy may be the best option at this point.
Thing is, I told all this to a friend studying homeopathy and she is vehemently insisting I do not touch surgery with a barge pole and instead treat it only with natural remedies. She said once they take my uterus I will 'never be the same' and all those hormones will screw everything up, balance wise. (?) ...She's since sent me link after link of therapists she recommends but all their websites are based around encouraging fertility. Any case studies just end with the woman getting knocked up and that's the 'happy ending'.
BUT, I am willing to keep an open mind if someone can tell me they have treated their endo this way. And I don't mean a reduction in pain, I mean so it won't keep on growing and mess up my kidney and my colon and everything else it is currently on the verge of doing.
Anyone? What do we think about this? Should I stop looking to get surgery and spend the next 18 months taking phosphorus tablets, on the off-chance it helps?
It's saddening to hear the only way to relieve your pain is having a hysterectomy.I don't know what your pain is like but it sounds a bit too drastic for me, you're only 40! Having that procedure will definitely bring hormonal unbalance that can even impaired your liver and therefore weaken your immune system. Do your research, our sexual organs send signals to other organs on our body to function properly, your body works as a whole, a perfect team. Even other internal organs will struggle to resettle in the empty gap left, meaning bowel or bladder prolapse. I would not have a hysterectomy unless it was life threatening.
Maybe you were told that because it would save several laparactomies to remove endo tissue.
As said, do your research and you will find out what is right for you xxx
yep, you’re right I think they know how far it has grown, and the associated risks as it continues to hurt more and more when I have bowel movements etc. much as I love the idea of a stoma I’d rather nip it in the bud and start my hormone replacement a few years early to be honest. All this pain and the heavy bleeding, it’s affecting my sleep and my stress levels no end. I would be taking natural hormones only, made from yams of all things! My friend had one when she was 30 and said it was the best decision she ever made. Otherwise I just wait and see what it does to me? Or maybe have scans every six months waiting for the next reason for a laparoscopy? Is that the best option? I’m not afraid of surgery so long as it’s with a recommended and experienced professional with excellent case studies to back them up. Feel kinda guilty for actually wanting it now! But I still do! Guess I’m weird.
I'm afraid to say your friend is going completey against what is known about endo. It is a progressive disease like cancer that spreads and spreads, would you friend say the same if you had cancer? Don't get it cut out, take some herbal remedies????
We are lucky to live in acountry where medicine is based on science and products are tested, homeopathic remedies have zero scientific evidence behind them. I once taught a guy who owned a really big homeopathis medicine company in Germany and he said well we know our products don't work but they don't do any harm either.
Some supplements can help a bit but there are no magical herbal pills, or even any conventional pills that can make endo go away. Excision isn't perfect either very frequently the endo comes back, but if you have a hysterectomy with your ovaries removed the chances of it coming back are drastically lowered. But yu need to make sure your surgeon knows what he/she is doing.
They should send you for a high quality scan first which will show where the endo is and if you have adenomysioisi too. Then they can discuss your options, it might be okay if they just excise the endo. I didn't take the hysterectomy option and my endo grew back very quickly I now have all my oragns stuck togther so badly they can't operate. I also have endo in my diaphragm and stuggle to breath and do normal things. I wish I had taken the hyterectomy option earlier my sister did and she had no reoccurance although her early menopause was stressful.
The reality is there is no really good treatment for endo, the most effective thing seems to be surgery but it is very differnt for differnt people in terms of effectiveness. Hormonal treatments can help too.
Your friend is "into homeopathy" she has no qualifications or medical knowledge but she is studyinga branch of alternative medicine that has zero scientific proof behind it. Herbal supplements are on thing and can help but homeopathy is teaching that taking minute quantities of something in doses that are so low they have no effect.
Conventional doctors don't have great knowledge about what causes endo and/or how to cure it but at least their ideas are based on science, evidence and trial and error.
I know which approach I would be leaning towards but this enitirley your decision.
yes and yes. Think our friendship might not fare too well after this….
Don't be so open minded your brain falls out. Homeopathy is called alternative because its not medicine. A Chinese doctor once said, on the radio, we have imaginary cures for imaginary illnesses, for everything else there is medicine. Tell your friend, thanks for your kind thoughts, then go to your doctor and get something proven to work. I can tell you, if you don't want anymore children an hysterectomy, it will liberate you. The last thing you need is kidney damage.
You guys have all made me feel so much better about trusting my instincts. She keeps on texting me, calling, sending links to people with these flowery hippy websites that all seem to be based around the end goal of fertility and a red flag just went up instantly. Makes me feel so guilty for taking the 'easy route' of surgery, but all this is really useful to hear, thank you ladies xx
Surgery is no easy route. I cant believe someone is telling you that! You have to do what is best for you and your body. There is no cure and no guarantee. Im 40 and made the same decision as you for a hysterectomy. Purely because it reduces the chances of re-occurance. Does it mean it will not happen again? 🤷🏽♀️ friends can give advice but should also support your decision and right to choose. Ultimately though you do what is right. My decision is based on fact evidence, advice from experts in the field and the quality of life i would like to have compared to now. I looked into alternatives but from what I found the advice and evidence from BSGE far outweighed anything else at this time. All the best
I used to be an acupuncturist and would despair of the “zealots “ whatever branch of medicine or woo-woo they pedalled. People in pain are bloody vulnerable and those with zest in their eyes can run all over them. It’s simply not right. You need the right treatment, at the right level at the right time for the correctly diagnosed issue on the right person… end of. Disease arises from a complexity of factors and can require a number of support processes to manage or cure if it’s an option. Know your disease and its stage, get the best advice from the most qualified and trust yourself. The body is amazingly plastic and will work around adaptations but you know disease brings limitations and acceptance of that brings the adjustments that enable us to heal. Surgery is part of that offering of things that can help (or not if inappropriate or badly performed) . Being fully informed means we can give knowing consent. We need to treat to help not to hinder!
No practitioner worth their salt would behave as your “ friend” has . It’s fear mongering of the worst variety.
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