Ive battled with Endo on my own for over ten years now. Never really felt the need to reach out to others until today.
I feel pretty hopeless after my follow up appointment with the Gynae yesterday. I was pretty sure we were going to be planning for my second Laporoscopy as my symptoms have gotten so bad over the past year. It worked the first time and lasted 3.5 years. So why wouldnt they want to do that this time?
He said it might make things worse. Might make more scar tissue and trap nerves causing more pain in the long run. The treatment offered to me yesterday was Desogetrel, a synthetic progesterone to manage the symptoms and stop my periods to stop the effects of too much eostrogen. I have used the pill in the past, it made me depressed and put on weight. I also think it caused my PCOS - i was fine, fit and very healthy before that. So because of that I vowed never to use synthetic hormones again.
It seems my doctor doesnt want to do a Laporoscopy until I have tried hormonal treatment, the other option was putting me into early menopause. (Im 36 - would i want night sweats, hot flushes, weight gain and insomnia right now? no).
From everything I read is that synthetic hormones are bad for you and could cause cancer. I have been researching into bio-identical hormones, one which has been licenced in the uk now called Utrogestan. Has anyone used this for treatment of Endo, has it been successful? Just really need to know if this is an option, dont even know if the doctor will prescribe it but if i am going to go down any hormonal route I want it to be as natural as possible. I have been using Progesterone Cream for years now and whilst it does help - its obviously not strong enough to mitigate my symptoms.
Does anyone have any other natural, holistic /dietary methods of treating their endo that they have found worked for reducing pain?
Thanks again. Look forward to hearing your replied.
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elektra4
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Hiya great post and I turned down zoladex many moons ago mainly in fear of the risk of remaining in menopause.. I stumbled across an acupuncturist who used to be a gynae bizarrely and although I went to treat sciatica she ended up helping me to a) conceive and b) stay pregnant... she also got rid of the sciatica..
I have PCOS too and am now 49 with a 10 year old daughter
Hope you find something that works for you and hope this helps.
Hi there, thanks for your post. Yes I think that is great advice actually. Finding a good acupuncturist in my area, Chinese medicine is amazing. Holistic is best I think. Thanks very much.
There is a vaginal crinon pessary also bio identical that I read of someone using.
I also get low mood on progestogen and have an unopened pack of cerezette on my counter that I cant face after my coil and zoladex experiences.
Curious to hear utrogestan is now available? I asked pre op 10 weeks ago and was told there were no bio identical a licensed yet. But he also muddled up natural and bio identical of course they are two different things. Bio identical being the important bit. ( Mares urine anyone? Perfectly natural, not synthetic, most definitely not bio identical ) . So I don't think he is clued up. Any links on UK availability do please share...
Avoiding parabens and SLES in toiletries and sanitary wear helped some symptoms.
I am organic and dairy free and have reduced my gluten intake to reduce bloating.
Thanks for the suggestions. I've gone organic now. Hoping that will help. I've bought the book on Endometriosis - a key to healing by Dian Shepperson. There are some excellent dietary and supoplental suggestions in there. Only up to chapter 5 tho. It's not a light read. Haha.
Some posts further down here on bio identical utrogestan. Sounds very interesting. Thanks for your reply.
I really wish i had turned it down. I have been pain free on it apart from slight niggles but all the side effects have got worse and worse. Actually enduring the crippling pain i had was actually less than how i feel now. I wasnt warned on how seriously this stuff affects your moods. If you already have any mental health issues, di not touch it xxxx
Hi Leese. Thanks so much for your reply. Yes I suffer from low moods, insomnia and low dopamine so on medication for that.which is why I don't want to touch them. They can really affect it badly. Well the pill did in the past so I came off it after a year.
Which medication are you on? Utrogestan or the synthetic hormones?
Sorry it's affected you badly. So has it made any symptoms better? Or are the mood symptoms worse to deal with?
I suffered quite a few horrible side effects on Provera and Depo-Provera (synthetic Medroxyprogesterone). My personal experience has been that, although I still suffered some side effects while taking bio-identical Utrogestan, those side effects were much much less severe.
I was initially prescribed Utrogestan by a private consultant, but my GP was subsequently able to prescribe it to me on the NHS.
I've also just started trialling Acupuncture for relaxation and I've found it very soothing. Sadly I'm not sure if it has had any impact upon my physical Endo symptoms, but if it helps me relax despite them then that's no bad thing.
Good luck & I hope whatever treatment path you decide on helps, x X x
I was prescribed utrogestan and oestradiol as "add-back" HRT alongside long term Prostap treatment. Utrogestan was actually prescribed to induce a monthly cycle, so the situation is not quite the same. But Provera and Depo Provera caused me to suffer near constant and often heavy bleeding, nausea, bloating, abdominal pain, severe breast tenderness, and migraines etc... and I found that although I still suffered from some of these when I was taking utrogestan their severity was greatly reduced and much more manageable. All these Endo hormone trearments are so trial and error, but bioidentical hormones seem to have suited me better.
I was diagnosed with endometriosis in 2006 at the age of 31 (I had chocolate cysts and moderate endo as well as adenomyosis), I have had four laparoscopies, tried Prostap injections for 6 months and in the past year I have been on three different types of the progestogen only contraceptive pills. Four weeks ago, I asked a private consultant if I could be prescribed Utrogestan (bio-identical progesterone) for endometriosis. He looked it up and said he hadn't heard of it being used to treat endo and it is used alongside oestrogen hrt treatment during the menopause. However, he did say I could trial it for 3 months to see how it goes. When I was on progestogen only bc pills, I started getting muscle aches and pains which have since been diagnosed as fibromyalgia, I also had spotting (sometimes heavy) almost every day, I was tired, suffered from anxiety and felt down. In the past month on Utrogestan, there hasn't been a change in my fibro pains, if anything I would say it was worse and my spotting is a bit better but I do get a period now (albeit a lot lighter than when I wasn't on any pills). However, I am more energetic, feel calmer with less anxiety and a bit happier than before. This is after one month, I will let you know what it is like after three months. I am also going to see my GP to ask if I can be prescribed this on the NHS if I want to continue on Utrogestan as it was quite expensive (about £25 for 3 months). I will let you know how it goesx
I hope it helps you too if you do decide to go on Utrogestan. In terms of the Fibro, I believe that I would have got this anyway without taking the pills, probably during menopause as I think it is due to a combination of me also having low thyroid levels (I am hypothyroid) combined with less oestrogen than before. This may not happen to you although I would get your thyroid checked out if you haven't done so already.
Thanks cherry for your reply. That's great information. Please do keep us posted as to how it goes for you over the next few months.
Looks like a pro care doctor might be the only way to get it prescribed first then my GP. He is useless. But I'll try the hospital first. That won't be a first for me getting a private doctor to do the job first.
Thanks for your help and I hope it continues to improve for you.
Yes, I have found the best way forward is going to see a private consultant first to get the medication sorted out and then he writes a letter to the GP as my GP does not know a lot about endo.
Hi Elektra and everyone on here, just to let you know that I have been taking Utrogestan for 3 months now. It has helped my endo symptoms but I think I will need to increase my dose to 200mg as opposed to 100mg because I read that is what other people take and I am still getting quite a lot of spotting. I have written a post asking about this. Hope you are all well, Cherry
Thanks very much for keeping me updating on how you getting on. That's great news that it's helped.
Have you had any nasty side effects? I'm particularly weary of weight gain, loss of libido, mood swings and depression.
Do you have any history of depression because hormones can effect everyone very differently and anyone with a history could have mental health issues worsened.
Thanks for your post. Hope you get your dose right. 😊
I do not have a history of depression apart from feeling quite low when I was taking the progestogen- only birth control pill. Since taking utrogestan, I have felt a lot happier and I haven't gained weight but everyone is different I suppose. Spoke to my gynaecologist today, he doesn't want to increase my dose as he is concerned about the osteoporosis and breast cancer risks of taking progesterone long term and said this risk would increase even more due to a bigger dose. He spoke about these risks so much that I am now considering having a hysterectomy! (although that increases the risk of osteoporosis too). I get to the point where I don't know what to do for the best. I have had four laps now and each time the endo has got worse. I am thinking I just want it all out so no more need for operations. I do know a hyst isn't a cure for endo and it could still grow back elsewhere but at least I won't have any reason to have a lap again. Sorry to go on. I hope it all works out for you.
That's ok. I understand. it's so frustrating and difficult to decide what to do. all gets a bit overwhelming. Never know if it's going to be a good choice or a bad choice.
I've only had one lap but 3.5 years on and my symptoms have come back with a vengeance. scared to try hormones. taking natural progesterone oil orally and it has helped some symptoms but not the pain. Doctor said I must try hormones before they decide another lap.
interesting you said yours has gotten worse with each lap. how so? do yiu get any relief and How long does it last?
When I say it gets worse after each lap, I do have a length of time of about 2 years where I get some relief from the endo. Then I have another lap after the 2 years which shows the endo has come back and spread further the older I get. My gynae said it is common for endo to grow back every two years. By the way, this is using excision surgery at a centre of excellence for endometriosis. I have had ten years of this going in and out of hospital, alongside taking various different hormone treatments, then developing fibromyalgia as well and I have had enough, hence the need for a hysterectomy I hope you find better treatment and relief than I havex
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I hope you find better treatment and relief than I havex
Anyone tried dienogest ethinylestradiol to treat endometriosis?
still unsure about hysterectomy, been waiting over 1 year for op date, and taken a year to see consultant for a discussion
Is menopause possible with normal FSH levels?
Endo care beyond laparoscopy + artificial hormones
Has anyone had any experience with bio-identical hormones?
