I’ve just been diagnosed with adenomy... - Pelvic Pain Suppo...

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I’ve just been diagnosed with adenomyosis at the age of 20 and wanted to know if I should try for a baby in the near future

EmmaMaude profile image
8 Replies

Does the condition progress over time making it harder to carry a baby full term ?

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EmmaMaude profile image
EmmaMaude
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8 Replies
Alaine1 profile image
Alaine1Administrator

Hi,

Not necessarily, it is thought that like endometriosis you are pre determined at birth as to the severity of the condition so if you have mild adenomyosis now you won’t necessarily progress to severe adenomyosis in 5-10 years time. It is only severe adenomyosis that is associated with fertility problems. Severe disease is associated with severe symptoms as well as prolonged bleeding each month 3 weeks+. Endometriosis is more tricky with fertility as those with severe disease don’t always experience fertility problems but might take longer but someone with mild disease still might experience fertility problems. I hope this helps.

EmmaMaude profile image
EmmaMaude in reply to Alaine1

Thank you so much you’ve put my mind at ease.

Alaine1 profile image
Alaine1Administrator in reply to EmmaMaude

Are you currently taking anything for your adenomyosis?

I also forgot to add that severe disease is also associated with treatment failure so the treatments don’t control severe pain or prolonged and heavy bleeding. In these cases sufferers usually end up on long term Zoladex which isn’t idea (if they can tolerate side effects) or a hysterectomy. I myself have severe adenomyosis on top of endometriosis and literally nothing controlled or even helped the adenomyosis so I’m on long term Zoladex. But I’m looked after by a great endometriosis specialist

EmmaMaude profile image
EmmaMaude in reply to Alaine1

I am currently waiting for an appointment with obs and gynae, as my Gp was concerned with the severity of my symptoms whilst on the pill. Not sure on the severity as I was told very briefly on the phone.

Alaine1 profile image
Alaine1Administrator in reply to EmmaMaude

It’s also based on how long you bleed for. So if you have a normal 7 day period then it’s highly unlikely you would be classed as severe. I was literally passing out abs vomiting with pain daily in addition to spending at least £70 each month on sanitary towels and tampons. I have to double up my protection and despite this I need to change every hour otherwise I flood. The pain made it almost impossible to eat at times which caused my weight to drop. I’m already slightly underweight anyway but this put me below 7 stone. Thankfully I’m now a slightly healthier 7.5 stone thanks to Zoladex. Your gynae will likely try you on various forms of the pill, the mirena coil or implant if you prefer. There is lots of other treatments to try first. Zoladex is the last drug to try essentially before a hysterectomy if you are usually had children. There are other drugs in the same class as Zoladex to try such as prostap which I also failed. At the moment try not to worry. It’s likely due to COVID you will wait a while for your first appt as existing patients have had appts cancelled. If the pain is bad I’d advise asking your GP for help managing it if you can’t manage with OTC medications. Also keep a daily diary which can help your specialist when you go for your appt

EmmaMaude profile image
EmmaMaude in reply to Alaine1

Thanks so much for the help and advice. Really appreciate it. I’ve started a diary recently, hopefully the gynae department will be able to give me something for me to be more comfortable.

Alaine1 profile image
Alaine1Administrator in reply to EmmaMaude

That’s good to hear. One thing I did use to find helpful especially at work was sticky heat patches that I put on my abdominal area and also on my back. My back pain was agony when the adenomyosis flared up. The best ones I found we’re pound shop ones as they were hotter than the more expensive ones from other pharmacies. They’d also last over 12 hours which was a lifesaver as it’s not always possible to use a hot water bottle at work

EmmaMaude profile image
EmmaMaude in reply to Alaine1

I’ve currently got a heat pack. I’ll invest in some heat patches once I’m back at work, as I am currently on furlough. Once again thank you so much for the help, means so much.