What pain meds for Adenomyosis?

Hi there,
I have 'suspected' adenomyosis. Have had the coil for a year now. Although it has helped slightly With pain, and stopped bleeding, I still have two weeks (at least) of heavy pain days. I'm really struggling to function. My pain is constant cramps, back pain, boggy/dragging.
I have been prescribed naproxen, and cocodamol but can only take that for 3 days at a time, and paracetamol doesn't touch it.
What are you prescribed for your pain?
What should I ask for?
How can I relieve the pain in the day?
I work full time so being mobile is a must!
I'm in uk so not sure if meds will be similar.
Please help, any advice would be massively appreciated!
Thank you pip xx

	Quote:
Originally Posted by Onlyyoungonce Hi there, I have 'suspected' adenomyosis. Have had the coil for a year now. Although it has helped slightly With pain, and stopped bleeding, I still have two weeks (at least) of heavy pain days. I'm really struggling to function. My pain is constant cramps, back pain, boggy/dragging. I have been prescribed naproxen, and cocodamol but can only take that for 3 days at a time, and paracetamol doesn't touch it. What are you prescribed for your pain? What should I ask for? How can I relieve the pain in the day? I work full time so being mobile is a must! I'm in uk so not sure if meds will be similar. Please help, any advice would be massively appreciated! Thank you pip xx

Hi. I had the Mirena IUD for heavy bleeding. It expelled after 5 weeks. Some of your pain could be from the IUD itself. Many many woman (including myself) have back pain and horrible cramps as a side effect from the IUD . Mine expelled 3 days ago in the ER and I am still having horrible cramps! Intense pelvic pain and lower back pain. I hope you find an answer!

Lorene

Adeno is so aggravating since they can only "suspect" and not confirm it 100% until pathology is done from a hyst. Docs strongly suspected adeno for me but after my hyst, pathology said "no adeno detected".

Prior to the hyst, I tried over the counter pain meds, codeine, vicodin/hydrocodon, naproxen, an IUD, birth control pills, & Lupron...none of which were capable of managing the pain. Percocet did the best job for pain for me, but even that was not enough as I would be in agony before I was allowed to take the next dose.

HOWEVER, everybody is different in the severity of their pain and their pain threshhold. I was a pretty tough cookie as they say when it comes to pain, so my pain was God awful severe!

Just keep trying alternatives for as long as you can take them without letting the quality of your life suffer terribly & if you're still not getting results....consider another doc.

Beat wishes to you...so many of us understand & can relate to your pain whether it is adeno or not.

Thanks for your replies,
Lorene, I'm thinking it's not my coil as it's the same pain I experienced before having it fitted, and it has helped somewhat, it's gone from 90% of the time to 60%!

Desilu, I think I've got a pretty good pain threshold. I'm 28 now and have been going to my gp since I was 18 regarding these issues. The problem is in the uk doctors are reluctant to prescribe heavy duty pain killers, especially to something the can't see! Makes me feel like they think I WANT to be on pills every day!! Not sure I can get Percocet here.
So even though no Adeno was detected, how do you feel since your hyst?

	Quote:
Originally Posted by Onlyyoungonce Thanks for your replies, Lorene, I'm thinking it's not my coil as it's the same pain I experienced before having it fitted, and it has helped somewhat, it's gone from 90% of the time to 60%! Desilu, I think I've got a pretty good pain threshold. I'm 28 now and have been going to my gp since I was 18 regarding these issues. The problem is in the uk doctors are reluctant to prescribe heavy duty pain killers, especially to something the can't see! Makes me feel like they think I WANT to be on pills every day!! Not sure I can get Percocet here. So even though no Adeno was detected, how do you feel since your hyst?

It is the same here in the States in regards to getting prescribed narcotics. I only received it since August of last year but had been getting treated for almost a whole year prior. You are in a different position being about 15 years younger than me, so I understand your concern of needing a pain killer for so long and let alone one that can become highly addictive. Heat also worked well for me. When at home, I would run a bath about as hot as I could take it and it would help my pain immensely in about 10-15 minutes (immersing in hot water is quite different from other forms of heat because it surrounds your body rather than targeting one spot). Obviously this is not anything you can do when not at home. How about heat packs, patches, or heating pads? I will tell you they were far less effective for me but perhaps could provide you with some relief.

You asked how I feel since the surgery even though no adeno was found...I feel FANTASTIC! I feared that adeno wouldn't be found and that I would be upset about that (sounds silly, but I just wanted my pain & suffering to be validated). I fortunately found a doctor that informed me I had fibroids (the prior 2 did not) & it was strongly suggested that a hyst would greatly reduce or eliminate my pain whether or not there was adeno because of the fibroids. Due to my age, desire not to have children, & daily pain, I was very willing to do the hyst & just hoped I could keep my ovaries (I did). My surgeon thought I was going to show adeno given my symptoms & responses to treatments, but I am so grateful this appears to be over The last day I suffered that horrific pain was the day before my surgery and I haven't had a hint of it since.

Like so many of the sisters here, I did a lot of research about adeno. Something I learned that I thought was quite interesting was that it is quite probable that many women have adeno but it isn't found in pathology after the hyst. The research went on to explain that pathology does not test the entire uterus, but rather take multiple samples to run because it is not cost effective and would take so much more time to test the entire uterus.

Wishing you all the best!

That's exactly it, I try not to be dependent on them but after ten years it's starting to get a bit too much. Yeah I stick to my wheat bag like glue when I'm at home! I think I might have to do a bit of a search for something more discreet, to go under my clothes... Bulging wheat bag is not a good look

I'm really pleased you have found relief! I totally understand your fear. It's scary that the only definitive answer can be after such a drastic surgery. That's really interesting about the pathology, I didn't know that but it makes complete sense...I guess we need to trust our instincts and our bodies just as much as we trust these doctors!
I'm hoping to push on through for as many years as I can.
Thank you so much for your support, it's just what I needed xx

Just out of interest, why can you only take naproxen and cocodamol for three days at a time? I have both prescribed and no one said anything about taking them for longer, I realise codene is habit forming, but is naproxen?

It's just the cocodamol that can be taken three days at a time (nice in theory) ... Naproxen I was told by my gp to limit where possible, due to risks of stomach ulcers and other issues, constipation etc. So I have lansoprazole to reduce risks of ulcers etc. But was advised to take 1000mg a day only on worst weeks.

Re: NSAID's and stomach ulcers. I was taking Advil/Motrin/Aleve for years, 2-3 days a month, for my adeno pain. One day (a year prior to my hysterectomy), I had sudden sharp stomach pains and ended up in the ER. I was hospitalized for 11 days with a perforated duodenum, with a NG (naso-gastro) tube from my nose down inside the back of my throat to my stomach, which pumped out all the bile my stomach created. I was on IV nutrition (a PIC line), with no food or water allowed, not even allowed to swallow water when I brushed my teeth, while we waited and hoped it would heal.

I had every test you can imagine, every scan, blood test, many times. I had 4 doctors, plus a couple of med students, in my room every single day, for 11 days, starting at 6 a.m. daily.

It was a very scary situation.

Diagnosis: Probable ulcer due to NSAID's.

I had to stop the NSAID's, which meant no more pain relief, as I didn't want to live on narcotics, which led me to make the hysterectomy decision. Best decision ever. Best pain relief was to just pull the darn bulky uterus out.

summer2015;
Wow! What an eye opener!
Thank you so much for sharing that, it really makes you think about what your putting into your body. What a traumatic experience, I'm glad you are ok, and found you peace at last!