Hi. I have been diagnosed with Andenomyosis recently on top of a 14 year history of Endo and Pcos. Dr's said that the Andenomyosis is in my fallopian tube. I have come to the conclusion now that a hysterectomy is the only way to go. Several years of taking pills and injections with no long term help have got me to this point. My doctor however won't do it because I am 31 with 1 child. We waited 8 years to conceive and we were told we needed IVF for this to happen. But thankfully we caught naturally. When I was diagnosed with Andenomyosis she told me it is unlikely I would conceive again. I only have one ovary left which is always full of cysts. They won't do the operation because I have one child and my age but they said it's unlikely I will have another. Am I fighting a losing battle?
Andenomyosis, Endo and Pcos. : Hi. I have... - Endometriosis UK
Andenomyosis, Endo and Pcos.
How about a compromise.Keep the ovary (it really is better for your long term health to keep one than have none and use HRT) and ask them to remove the fallopian tube with adeno in it. If they are pretty sure you don't have adeno in the uterus walls at this stage then getting rid of one tube and keeping the ovary and uterus does at least protect your longer term health and gives you the option to have IVF for a 2nd baby should the need arrise.
Just a thought you might want to put to them if they are not keen on the last ovary removal idea and i do understand why that would be.
I am down to one tube and 1 ovary myself. I do have a mirena installed which does cut the periods right back which has been fantastic, but it doesn't suit everyone, nevertheless it is certainly worth trying because if it does work for you, you will notice a huge improvement in quality of life.
Hi thank you for your reply. They are reluctant to do any surgery due to previous surgical history and an emergency c section with my daughter causing adhesions.
How long have you had the coil in? I am wondering if it will help with pain from adeno if they refuse to remove it.
I am 26 without children without a fallopian tube, endometriotic ovaries and adenomyosis. I want a hysterectomy but they won't give me one for atleast another 10 years, so I feel your pain. For me, the endo, when the drugs stop working (I become tolerant t their effects) rules my life, but they won't do surgery until the drugs stop working. Maybe just find some way to move forward with the right drug selection.
Hi. It is with regret I say this but it's nice to know I am not alone. I have been on tramadol and voltarol for years for pain management. But sometimes it gets so bad that hospital is the only answer.
This pain is taking over. I am either in pain, weak from blood loss or just to tired to do anything with my daughter. This is why I am pushing for a hysterectomy. I don't want to be in pain and too out pf it to enjoy her.
I have now got a NHS referral to a private consultant so I am hoping that this will give me more options. Have you spoken to your Dr to see if this is an option? X
I have, over the eyars worked my way through the different hormonal options and currently I am taking Everol (patches) and norethisterone which is tolerable. The pain is the least it has been for a long while because I have no periods. I agreed with the hospital not to persue a hysterectomy if they could help me to stop having periods. And that is currently where we are at. I am no periods and the pain is therefore just uncomofrtable at times. Perhaps you need to have a simliar conversation?
I have had a mirena and norethisterone. And they didn't work for me. My heavy periods are so heavy that I have been diagnosed with anaemia and have to take iron supplements everuday. I have tried the hormonal routes. They problem with my hormones is the raised level of testosterone. Apparently this can cause some medication not to work. Its horrid. It's not just the pain and the periods and everything else it's all the other symptoms. Excess hair, weight gain, excessive this and that! I feel less a woman and more like a fella everyday lol xx
Hi I had a Hysterectomy when I was 32 years old I'm now 51 years old I don't have any children ,it sounds to me that you really need to see another doctor as the doctor you are seeing is not really doing any thing to help you
If you did have a Hysterectomy you may be a lot better and feel better in your self
At the moment I have endo. On my lungs kidneys bowel bladder my doctor can not do any thing to help me but he is all ways there when indeed him
Your doctor do,s not no how you feel and how you are Suffering some doctors don't like to give Hysterectomy when you are young ,but some times it's the only way to go
I really hope that you get help and that you can get your life back on track
Best Wishes
Maryannx
Hi Mary Anne. Thank you. I am glad that you had a doctor that paid attention. I have recently gone private through the NHS scheme. So I am hoping to get somewhere this time. Currently my old Dr is only prepared to offer prostap. Which I tried when I was 21 whoch was awful. I don't make the decision for hysterectomy lightly. I just wish I was well. My little girl is my lofe and I hate that I am so ill xx
Hi lets hope you get the help that you need ,I have found out since I had endo which is 20 years or so some doctors do not lie you to tell them there jobs ,
Some doctors do not even no any thing about endo it drives you up the wall
You keep fighting and good luck there are two sides to endo one were you are trying for a baby heavy Periods etc then there is the side that no one talks about were you can get it on most of your organs and yes you can die from it I have that side I'm ill every day the endometriosis uk no nothing about the way I have it and so I havefriendswho are American doctors they no more then uk
Well take care
Xxx
Rather than having surgery to remove the uterus have you looked in to having microwave endometrial ablation (MEA) which involves basically cooking the lining of the uterus from the inside by instering a device or a balloon which heats up and fries the inner walls of the uterus to hopefuly stop you having periods, without the need for surgical removal of anything. That at least would address the heavy bleeding issue once and for all.
It does still leave you with the adeno in tube issue, but by getting rid of one huge monthly burden of periods then you might find it so much easier to cope with the adeno.
how long did you give the mirena towork before having it taken out?
even if it doesn't stop periods completely it should stop most of the lining from coming away each month and reduce the periods to much lighter bleeds.
It does take several months to build up enough layers of goop on the coil device to allow that to happen though, so if it is removed too soon it hasn't had a chance to really show what it can do.
The other option to try and I really don't like recommending it, is the GnRH drugs which put you in a state of temorary menopause. Especially when you have kiddies to lookafter, as it can be a dreadful experience side effects wise, but it certainly will stop your periods while you are on it, and perhaps it might be worth having the mirena put in and star the GnRH drugs to stop your periods while the mirena gets a chance to get working properly. The GnRh drugs would also stop adeno from playing up while on the drug. It doesn't cure, it only pauses the process of ovulation and periods (with a whole range of grim side effects possible too.)
I think you do have to consider handing the adeno and the periods as two separate medical issues give your age and the NHS reluctance to do hysterectomies.
Certainly worth doing homework on Microwave Endometrial Ablation (it is not without risks) as well as GnRH drug therapy (cancer drugs -so chemo side effects) and mirena.
I have not had the MEA, but have had the GnRH/Mirena option. It wasn't a nice thing to go through by any stretch of the imagination, but I am now clear of the GnRH drugs and the mirena did workwonderfully for quite a while. It did actually stop my gushing periods. However i am now back to having light periods and spotting but still not on the scale of before.
My periods were erratic, often up to 15 days in duration, very heavy and painful for many years, so I know how utterly liberating it is to at last be free of heavy periods, even with still having endo, it does mean i am better able to cope with everything else, without having the pain and worry of a monthly period like i was getting them before.
Hope you find some suitable solution asap.
Hey. No that has not been offered to me. But I certainly look into it. They have offered prostap and zoladex but I refused it for the menopausal symptoms that come with it. I'm a hormonal monster at the best of times lol. I will go in with an open mind as everyone has given me different angles to approach. But I just felt like they were so dismissive when they diagnosed me x
Hi, I had an endometrial ablation, yes it has stopped the heavy bleeding BUT I still get periods and the pain is now more severe ( 2 weeks off work in June). The pain killers do not help at all (tramadol & naproxen). Please do your research before making any decisions. Good luck.
Aww sorry to hear your having pain. Naproxen did nothing for me. Tranxeamic and Mefanemic also failed to work. I can't cope on tramadol. I think the withdrawal is worse than the benefits of taking them. I will research everything fully. Thamk you. Hopefully you can get some relief x
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