Adenomyosis

[Alison1233-4536]

I have just been diagnosed with Adenomyosis and realise that a lot of symptoms I have had for a while can now be explained. I have discussed with the GP the options available and am not keen on just using pain control. The GP mentioned the mirena coil as a possibility . Does anyone have any experiences with this, would be happy to hear your views.

[Alaine1 Administrator]

Hi Alison

I have severe adenomyosis and have tried the mirena twice. The first time was for over a year but was unsuccessful and the second time was for 6 months but it had to be removed as I wasn't coping with the pain or 3 weeks of bleeding each month which hadn't changed - so it was said I'd had treatment failure with it. Having said that I have heard some people say it's the best thing and works very well for them so it's definitely worth a try. It should as a minimum be used for at least 6 months as it gives the mirena time to settle down - some people do stop getting periods immediately, others over time and some still get one but it is better in terms of pain and flow.

Failing that you could try the Nexplanon which is virtually the same except it's an implant that is put in the arm. Some people find this option more acceptable. It's put in using a local anaesthetic and can be done via your GP ( not all of them do it ) or via a sexual health clinic. It doesn't take long. The mirena is usually preferred by medical professionals as side effects if any are usually confined to the uterus whereas the implant in theory might have side effects elsewhere. The side effects from any medication though is very difficult to predict and no one should be worried about side effects mentioned in patient information sheets or by others as I've had medications with horrific side effects mentioned and not suffered a single one. So please don't get caught up worrying about them as side effects often settle down over time anyway as your body gets used to it. Many are listed simply because people have mentioned them to doctors, pharmacists etc and they have to report them using the yellow card. This means that they the get listed on this sheets in medication boxes

There are other medications that can be used but these often won't be used unless you have tried and failed to respond to them. They also do more or less come with at least 1 or 2 side effects which may not settle down over time. I hope this has helped

[Alison1233-4536 in reply to Alaine1]

Thank you so much for information you sent it's really helpful. I have also heard different views from various people about the use of the mIrena but it helps to hear from someone who has also got adenomyosis. Interesting about the side effects, I've also had thyroid surgery and am on medication so not sure if that will effect anything else I take but will have to see. Have been given Naproxen for the pain but don't want to have pain relief as a long term option if there are other things available to try.

Thanks again .

[Hidden]

Instead of medina you could try a progesterone only birth control pill, that way you don't have to go see a doctor to stop if you dislike them & can go off at any time.

An implant would be a good idea however only if it's progesterone, estrogen can lead to blood clots.

[Alison1233-4536 in reply to Hidden]

Thank you for your reply, all helpful to consider.

[Alaine1 Administrator in reply to Hidden]

The implant is only progesterone based, I've also had this myself but sadly wasn't effective. This is often used for those who really don't want anything placed in their uterus. It is easy to remove and in most cases only takes 20 minutes maximum

To my knowledge there isn't a combined implant that is fitted in the arm.

[Alaine1 Administrator in reply to Hidden]

Hannah117 blood clots are only of concern if someone has a history of them, pre existing conditions that can make blood clots more likely. This in itself wouldn't necessarily make oestrogen therapy out of the question but the risks weighed up by the specialists.

Oestrogen is often not used if someone is having surgery but only if they are likely to be immobile for a considerable length of time. Again the risks are weighed up by the specialists and it isn't usually of concern for surgeries that are considered relatively minor and/or where immobility is likely to be relatively short. Again anyone concerned should discuss this with their specialists who will weigh up the pros and concerns

[Hidden in reply to Alaine1]

Oestrogen also feeds endometriosis and andenomyosis, according to a doctor I saw even if it's a pill.

And with the newer generation pills and patches blood clots can happen without a prexisting condition. Just like how blood clots can form during pregnancy and couples should refrain from sex since they can detach and move somewhere else.

stoptheclot.org/birth_contr...

time.com/3897046/oral-contr...

[Alaine1 Administrator in reply to Hidden]

Yes I'm aware of oestrogen feeding endometriosis and adenomyosis as I have both conditions. What I wrote was about saying oestrogen causing blood clots as it's not as simple as that - I know through my own research and also my degree in pharmacology. Blood clots can occur even with the newer generation pills but again it's not as clear cut, some of these patients through testing will be found to have conditions that give them increased risk of developing blood clots or the patient didn't mention a condition to a doctor as they didn't feel it was important.

The article in time does however mention that the most suitable medication should be used "

Doctors need to consider all health issues when prescribing contraceptives, selecting a drug type associated with the lowest risk for patients with particular susceptibilities.”

There is no evidence to suggest that sex should be avoided during pregnancy unless it has been recommended by a doctor, midwife or obstetrician. Anyone who had/has concerns should contact their midwife or obstetrician who will gladly advise. Further information on this can be found on the NHS website which

nhs.uk/conditions/pregnancy...

[Desperateforrelief]

Hi, I had adenomyosis in the 80's. I am so sorry for your suffering. At the time the only thing they offered was a hysterectomy because Naproxen didn't help my pain much. I found heat to help a lot. Thermacare could possibly help. I know they are expensive. Might help when you are out and about. Blessings.

[Alaine1 Administrator in reply to Desperateforrelief]

Hi Desperateforrelief

I would imagine there was even less information about adenomyosis than there is now! It must have been very hard and frustrating for you.

I use heat for pain rather than anything thats cold and I do find it very helpful. I've used the thermacare and other heat patches. I agree they can work out more expensive but I tend to wear them to work as a hot water bottle is out of the question. They do sell heat patches in the pound shops and they do work equally as well. It is a case of finding the best one for you to.