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Original poster

Suspected Adenomyosis

17 replies

gr8kids · 15/12/2013 09:27

Hi. Has anyone had a HVS (high vaginal swab test) done to confirm Adenoymosis? I have had an ultrasound and a transvaginal ultrasound with no answers except few small cysts. Just hoping this test actually helps show what's going on inside. Any advice or experience will be appreciated please.

OP posts:
meditrina · 15/12/2013 09:30

Adenomyosis is a diagnosis of exclusion.

They will be testing for infection, to rule that out, just as the scans will have ruled out a number of other conditions. So adenomyosis will be the diagnosis that remains. It's untreatable, so all that can be offered in symptomatic relief. I think mirena is often recommended.

Original poster
gr8kids · 15/12/2013 10:13

Thanks meditrina. I've had the mirena and that didn't help. I also had an endometrial ablation almost 4 years ago which did help with the excessive bleeding and with the pain for a couple years, then the pain came back and has aggressively worse with each month. I've had doctors telling me they think it's endometriosis but about 3 years ago I had laparoscopy and that gynae didn't find any endo. So who knows what exactly is going on with me.

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meditrina · 15/12/2013 10:29

Adenomyosis is like endometriosis, just that it's grown into the walls of the uterus rather than random places outside it.

If it is severe, and symptoms cannot be otherwise be relieved, then you're in to hysterectomy territory, I'm afraid. Adenomyosis diminishes and vanishes with menopause - but if having a big impact on your life, you might not want to stick it out. Though there might still be a medical option (trans-thingie acid, or am I muddled on that?)

Original poster
gr8kids · 15/12/2013 10:42

Not sure about the trans thingie acid. About a year ago the gynae wanted me to have Zodalex injections to put me into medically induced menopause along with HRT. I just wasn't ready to put my body through that. But it's so bad now with the pain that I'm quite desperate to get sorted out. Just sometimes feels like I'm losing my mind.

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Waitingaround · 15/12/2013 10:49

They can diagnose with hystoscopy I think. I've had zolodex and hated it- now had hysterectomy and much better, ( had endo too). My consultant said minera not good for adenomyosis

Original poster
gr8kids · 15/12/2013 10:54

Waitingaround if you don't mind me asking what's your story. What were your symptoms and how did they diagnose you? I keep telling them that if I had lap years ago and they didn't find endo then I can't have it. I have a couple of friends with similiar problems and they have had a hysterectomy and have got their life back. I have 3 children so don't want anymore but the big thing for me would be the recovery as hubby is in the army and it's not as simple as him just taking off to help. But then today I'm feeling good, but on a day when I'm in so much pain I could gladly get it all taken out.

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Waitingaround · 15/12/2013 12:57

Hi
I suffered for years with painful hideous flooding periods (pain worse than labour). I also had bladder and bowel problems- IBS type symptoms. On top of this would suffer stabbing tearing type pains at any time of the month.

I had an MRI for back pain- this showed large adenometriomas on both ovarys. I was therefore referred to gynae who arranged a laparoscopy to drain the cysts and a hysterscopy too. I awoke from the GA to be informed that they had placed me on the waiting list for a hysterectomy. Basically the consultant confirmed severe endo with multiple bowel adhesions with adenomyosis as well. I was placed on zolodex to calm the endo down so the operation would be easier. The consultant said the only way to sort the adenomyosis was hysterectomy.

The hysterectomy including bilateral salpingo oophectomy was carried out 9 weeks ago. The op wasn't as bad as I had feared, I have been back at work a week now and feel fine Smile. In fact I feel so much better than before! The recovery wasn't painful as such but you are very tired and must rest. I drove at 5 weeks.
Ps my back pain was actually pelvic related...
Pps- I am 42 and now on HRT- which is working well Smile
Sorry for the ramble....

Waitingaround · 15/12/2013 12:59

Oh and have a look at the hysterectomy association they have a thread on adenomyosis, which might be useful

Original poster
gr8kids · 15/12/2013 15:08

Wow that sounds like me all over. Also bowel trouble which doc says i have IBS and my back pain is really bad some days. Recently my pain has been so bad in pelvis and back that paracetamol and ibuprofen hasn't helped for the pain so doc gave me codeine. To be honest i seriously do not want to be living everyday on such strong pain pills. I see the another gynae tomorrow so Will see what he says. Its tough because i always have to change docs with us moving around. Do you please have any advice as to what i should ask or say to the gynae tomorrow?

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HoHolepew · 15/12/2013 15:14

I was diagnosed with it by a vaginal scan. I had a hysterectomy. I had had a ablation a couple of years before this diagnosis and to be honest I think when the womb lining started to grow back it was much worse than before the ablation.

I was 43 when I had the hysterectomy and will be on hrt until M51 at least (I had both ovaries removed).

Twinkletights · 15/12/2013 15:24

Sorry that you are struggling gr8kids and really hope that your gynae helps tomorrow.
I also have suspected Adenomyosis and struggle with constant back pain and heavy periods. I had an MR scan last week and back to see my gynae this week.
Will watch your thread with interest and will be thinking of you tomorrow.

Original poster
gr8kids · 15/12/2013 15:39

I also think that the pain is much worse now since the ablation. Its madness that most women have years of this pain and tests with no answer. I don't want to do another day with this pain let alone years again. Good luck twinkletights hope you have the results and outcome you looking for this week. Do you ladies ever feel as if you might be going mental and its all in your mind, cause after all the tests and no actual relief nothing changes.

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Waitingaround · 15/12/2013 16:23

I would just tell the consultant what you have told us
Good luck

Twinkletights · 15/12/2013 17:27

I couldn't agree more gr8kids. Gynae troubles are abysmal and have such a huge impact on us on an everyday basis. I want all of this to end too x

Original poster
gr8kids · 16/12/2013 12:14

Hi ladies. So been to yet another gynae this morning and he suspects endometriosis and I have to go for laparoscopy. The thing is though not long after I had the ablation almost 4 years ago, I had a laparoscopy done and no endo was found. Now is it possible that this time if it is there, it would show or what? All these different gynaes have their own opinion. Seriously now hey. The waiting game all over again for a lap to be done and hopefully this time I'll get some answers. Think the waiting time on NHS for laparoscopy is within 18 weeks. All this is driving me insane. Wish I was strong enough to just handle this pain and get on with it.

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Twinkletights · 16/12/2013 18:17

Hi gr8kids that sounds very frustrating being made to wait all over again Xmas Sad. Did your gynae mention the Adenomyosis or is he just looking for endometriosis? So confusing isn't it?
Hope that you are okay and that he gave you good advice to manage the pain until your laparoscopy.
Sorry that you are still on the waiting treadmill x

Original poster
gr8kids · 16/12/2013 20:09

No mention of adenomyosis. And just have to keep up with what Im doing now with regards to pain relief. What more can you do hey. X

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