Endometriosis UK
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REPOSTED - replies wanted - help please! Adenomyosis and answers

Hi everyone

I have reposted this as I would like replies please.

I just want a bit of advice about a few things - firstly adenomyosis (please read on) a and secondly some clarification regarding some things I have been told (at the bottom). I am feeling quite confused and unclear.

For those of you who have read my previous posts you will know that I was placed into the medical menopause (decapeptyl) from summer 2017 to January 2018, and since coming off I have experienced severe endometriosis pain and symptoms. These included;

-severe pain that was preventing me from going to work

-pain during and after intercourse

-intense pelvic and abdominal swelling

-flared up urinary symptoms

-very heavy and long periods

I recently underwent a third laparoscopy done by an accredited endometriosis center and specialist in Bristol (I was referred there by my "old" gynaecologist because this center was best at handling more complex cases like myself).

After being in theatre for almost 2 hours, I received the news that they had found "no new endometriosis growths" (bearing in mind that in my last 2 laps - both a year apart - my endo has spread and spread). Now, this is a good thing - it means that the medical menopause has done its job. However, it does not explain why I have been in severe pain with worse endometriosis symptoms.

The surgeon came to see me after my operation. Long story short, they have suggested a few things that are likely to be the source of my pain.

1) endometriosis scars/adhesions from previous surgeries (they did not want to remove these as they believed they would just grow back and cause more problems), particularly evident in and on my bowel

2) pelvic nerve damage (from where the deep endometriosis from previous surgeries has been removed, the nerve endings it grew remain and still cause symptoms etc)

3) adenomysosis

Now, they have told me that my above symptoms, and the fact that the medical menopause was so beneficial to me (it seriously got rid of 99% of my symptoms), that they are of the opinion I have adenomyosis too. They explained to me that the only way to diagnosis it "properly" is via a hysterectomy, which I do not want right now. I am due to the see the team again in 10 days to go through everything and discuss treatment.

Does anyone have any experience of adenomyosis? Did anyone else get diagnosed like this during a lap?

Secondly, I would like clarification on a few things. These are things that the surgeon told me yesterday that during my many years with endometriosis I have either never heard of or heard of differently.

1) endometriosis is something you are born with - they explained to me that at the moment my "endo cells" are dormant but could grow again at any minute

2) if I were 30 years old and they'd found no new endometriosis growths, they'd have told me I "didn't have endo any more"

3) adenomyosis is not linked to painful intercourse or pain after intercourse

Thank you in advance.

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I’ve had a similar experience. My doctor thinks I may have had adeno as well as Stage 4 endo.

I’ve recently had a hysterectomy and they will know from pathology if I did have adeno. I had such relief from chemical meno that it’s interesting to hear this is an indicator of adeno.

My doctor told me adeno will only be conclusively diagnosed after hysterectomy but I wanted the op anyway so adeno or not I wound have gone ahead. A diagnosis of adeno will only further confirm I’ve done the right thing xxx

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Hi Janine33 thank you for your reply!

Yes they’ve told me the only way to diagnose it “officially” is when they send the uterus off after a hysterectomy. I don’t want a hysterectomy just yet, so it’s going to be about getting pregnant or going back into the menopause.

X

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It’s good that the chemical menopause helps so much with your symptoms, it did with mine and it was a comfort to know I could go back into chemical menopause when I needed relief. It worked perfectly for me each time.

I’m not sure about how endo develops. I’m not sure the doctors even know.

If you’ve ever had endo I don’t think a doctor can tell you that you don’t have it anymore. I think it may be controlled but not cured. Even after my total hysterectomy with ovaries and tubes removed I won’t consider myself cured. I know it’s a condition I’ll continue to manage.

I’m not sure if adeno causes pain with sex or after. I definitely think it could, especially if it was advanced xxx

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Hi Janine33

Yeah that’s what I thought. My previous gynae told me that endo is a mixture of auto immune problems and hormones, others have said there is no cause and this one has said I was born with it. I 100% agree that it’ll never go - even though it’s not active at the moment doesn’t mean it’s gone you know? These are things I want clarifying because they are completely different to what I’ve been told in the past. Wasn’t really impressed with the team to be honest xxx

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I've seen that theory mentioned elsewhere but I wasn't sure about it either. It's obviously not helpful to just have it thrown in there and not explained fully. It seems like the team were quite dismissive of you?

I've only just been diagnosed and I'm no expert in any of this but something I'm looking into and have just started having is visceral-pelvic mobilisation. It's basically a very specific and deep massage on the pelvis that works at the lesions. It's carried out by a physio. When I read your description of your difficulties and what the surgeon said, I wondered if this could be something worth trying?

I've had 2 sessions so far. So I can't say whether it's doing anything positive for me. So far it's definitely causing a lot of discomfort and a possible increase in my symptoms but the physio seemed to think that was normal. I think it releases a lot of toxins, much like a massage so I'm pretty knackered from it. She thinks the more I do it, the more I'll benefit. I just thought I'd mention it, might be worth looking into.

Sorry the team weren't good with you. Don't they realise the journey you have been on to get there?!

X

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Hi weekari!

Thanks for your reply.

I am actually a Physio and have heard briefly of that technique and will look more into it (it’s not the area I’ve specialised in). Hopefully it’ll give you some relief!

I know what to mean. I am going back for my follow up tomorrow so will be having a good chat with them - I’ve got questions written down too.

Thanks

Lauren

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