Sorry to hear this. Can you get a 2nd opinion ? Did they show you the pictures?
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They didn’t show me pictures, I woke up and the nurse told me (This was last Tuesday). She showed me the paper but I was still feeling drowsy as it was only a few minutes after waking! I saw that it was all negative (didn’t find anything).
The consultant came to see me afterwards and he said that they found nothing and that’s when he recommended seeing a bowel specialist as it it nothing gynaecology related.
They did two cuts, one entry at my belly button, and one at my right ovary. I’m wondering if because they didn’t do one at my left one they missed it or is that not the case? I’m not sure how it works.
I had 3 cuts and my main area was my left side he couldnt see anything on my right so maybe speak to consultant and ask if he checked all sides x
I’ve just seen my third specialist and finally someone actually acknowledged it could be endo!
Im lucky enough to be seen privately and we’re arranging for me to have a laparoscopy and the camera thingy that starts with h! She also said if she finds anything she will treat it and remove the cysts I have.
she mentioned taking time off afterwards, I work from home, how long would you recommend? I’ve never been off for more than a couple of days so don’t actually know what you do about a sick note etc
Im lucky enough to be seen privately and we’re arranging for me to have a laparoscopy and the camera thingy that starts with h! She also said if she finds anything she will treat it and remove the cysts I have.
she mentioned taking time off afterwards, I work from home, how long would you recommend? I’ve never been off for more than a couple of days so don’t actually know what you do about a sick note etc
Glad I found this thread. I have PCOS and adenomyosis. Been diagnosed PCOS for 16 years and adenomyosis for about 2 now. I really want it just gone, you know? The pain is unreal, I don’t have periods and I don’t want any more babies but they said I can’t and I can push but it would be a ‘vote’ from specialists for the go ahead, and considering my age they say it isn’t in my best interest … it’s so draining 
Hi,
I have recently been undergoing investigations into my horrifically heavy periods, pain, bloating, etc etc. it’s taken 3 years for the GP to listen.
I’m anaemic due to the bleeding and have required iron transfusions. Every period gets worse. I’ve recently had a urgent USS and MRI alongside bloods for tumour markers.
I have been told I have endo, adenomyosis, polyps, fibroids and cysts on both ovaries. The ovaries are said to be touching and are attached to my uterus.
No decision has been made on my treatment, only that I will be discussed at the next multidisciplinary meeting!
This is impacting on my life everyday, I’m constantly dreading the next period as the bleeding is so bad, it’s making me depressed and I’m struggling due to the symptoms to cope running round after my little girl.
Just wondered if anyone has experiences of similar and what treatment they received?
I have recently been undergoing investigations into my horrifically heavy periods, pain, bloating, etc etc. it’s taken 3 years for the GP to listen.
I’m anaemic due to the bleeding and have required iron transfusions. Every period gets worse. I’ve recently had a urgent USS and MRI alongside bloods for tumour markers.
I have been told I have endo, adenomyosis, polyps, fibroids and cysts on both ovaries. The ovaries are said to be touching and are attached to my uterus.
No decision has been made on my treatment, only that I will be discussed at the next multidisciplinary meeting!
This is impacting on my life everyday, I’m constantly dreading the next period as the bleeding is so bad, it’s making me depressed and I’m struggling due to the symptoms to cope running round after my little girl.
Just wondered if anyone has experiences of similar and what treatment they received?
Oh my love im so sorry you have this horrible horrific disease my heart goes out to you. Have you had any endo removed in the past? Like a lap? Ive had the ablation on my womb which helped significantly and stopped my bleeding ive also been on zodelex was on it for 9 months really helped first then started with extreme back pain and went a bit crazy. Have they mentioned a hysterectomy xx
I haven’t had any treatment yet. My main concern is that any treatment will be a temp measure and il be straight back to square one of symptoms and further treatment later within a couple of years.
All they are doing at the minute is treating my symptoms. Iron infusions, tablets to help my blood clot (which aren’t working) antidepressants. I just feel stuck in limbo.
To be honest if given the option I would go for a hysterectomy. I want my quality of life back. I have a 3 year old that we are blessed to have after Ivf, I’m 43 and expanding the family isn’t an option anyway. I just want my life back x
I’m about to have a similar conversation with my consultant when I go back in September. Diagnosed adeno, failed ablation, sick and tired of the last 10 years of horrible symptoms.
Had the worst flare up I’ve ever had this month that knocked me out for a week. I can’t be losing days and weeks of my life like this!
If anyone has any advice on what can be said at my appointment to get them to consider a hysterectomy I’d be very grateful!
I’m 40 next year, 2 kids, 2nd one after lots and lots of fertility issues and heartbreak that we are 100% certain we don’t want to go through again. My child bearing stuff is done. But they want me to jump through hoops when they’ve dragged their feet for SO long! The NHS has only this month added its own Adenomyosis page, absolutely shocking!
Jumping in here with a few thoughts/tips.
Ladies please push for EXCISION surgery rather than ablation for endo. Ablation only burns off the top layer of endometriosis - excision cuts it out like a root and significantly reduces the chances of reoccurrence (ie. endo growing back). Remember endometriosis can never be cured, only treated. On the other hand, a hysterectomy is the only cure for adenomyosis (since it only affects the uterus) but a lot of people have both conditions. Endometriosis can still grow back after a hysterectomy.
Nancy's Nook is a great resource for finding proper endometriosis specialists (the majority of OBGYNs aren't specially trained in endometriosis surgery):
nancysnookendo.com
The FB group "The Endo Space" also has a lot of useful info.
I also love @mypelvicpain @reythewarrior on Instagram
More often than not, ultrasounds and MRIs are a waste of time unless you have deep infiltrating endometriosis. The only way to be formally diagnosed is via laparoscopy so please don't allow GPs to fob you off. Push for surgery at least so you can have a proper diagnosis. If they don't find anything it's likely because they're not an endo specialist and don't know what to properly look for.
Pelvic floor therapy also helps as a treatment (not a cure), Your pelvis and abdomen and surrounding muscles are so seized up from being in constant pain. PT helps to loosen these muscles and helps your pelvis function better. When I first started going I was basically seized up from my ribcage to my knees without even realizing.
It breaks my heart seeing so many women in pain and getting no quality care from their GPs and even GYNs. It's outrageous how under researched and underfunded endometriosis and adenomyosis is. I'm in the US and travel 3 hours to see a specialist surgeon. We are failing so many women with this awful disease.
Ladies please push for EXCISION surgery rather than ablation for endo. Ablation only burns off the top layer of endometriosis - excision cuts it out like a root and significantly reduces the chances of reoccurrence (ie. endo growing back). Remember endometriosis can never be cured, only treated. On the other hand, a hysterectomy is the only cure for adenomyosis (since it only affects the uterus) but a lot of people have both conditions. Endometriosis can still grow back after a hysterectomy.
Nancy's Nook is a great resource for finding proper endometriosis specialists (the majority of OBGYNs aren't specially trained in endometriosis surgery):
Nancy's Nook Endometriosis
This is an endometriosis learning library. It contains information collected and shared over many years. We have now compiled these resources and present them for you as a living library of information that will continue to grow. It is up to you what you do with that information.
nancysnookendo.com
The FB group "The Endo Space" also has a lot of useful info.
I also love @mypelvicpain @reythewarrior on Instagram
More often than not, ultrasounds and MRIs are a waste of time unless you have deep infiltrating endometriosis. The only way to be formally diagnosed is via laparoscopy so please don't allow GPs to fob you off. Push for surgery at least so you can have a proper diagnosis. If they don't find anything it's likely because they're not an endo specialist and don't know what to properly look for.
Pelvic floor therapy also helps as a treatment (not a cure), Your pelvis and abdomen and surrounding muscles are so seized up from being in constant pain. PT helps to loosen these muscles and helps your pelvis function better. When I first started going I was basically seized up from my ribcage to my knees without even realizing.
It breaks my heart seeing so many women in pain and getting no quality care from their GPs and even GYNs. It's outrageous how under researched and underfunded endometriosis and adenomyosis is. I'm in the US and travel 3 hours to see a specialist surgeon. We are failing so many women with this awful disease.
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I had a lap and treatment done last month for what she thought was endo, she also suspects I have andenomyosis but will need an mri at a later stage.
Anyway, I got the pathology results yesterday and apparently I don’t have endo, it’s Endosalpingiosis, anyone ever heard of it/have it? Apparently it’s quite rare and doesn’t seem there is much info around
Anyway, I got the pathology results yesterday and apparently I don’t have endo, it’s Endosalpingiosis, anyone ever heard of it/have it? Apparently it’s quite rare and doesn’t seem there is much info around
Hi everyone 
I’ve had my MRI results back today (after 14weeks!) it states possible Andenomyosis rather then endometriosis which both my specialist and I thought would show. After reading up a bit it states it can only be confirmed if I have a hysterectomy? I had a miscarriage 2 years ago and have been trying to get pregnant for over 7 months after the specialist telling me to try now. I’ve just turned 30. 6th November. I feel so hopeless and confused? Could I get pregnant again? I’m in so much pain all through the month but i really do not want a hysterectomy
should I ask for a laparoscopy? Just to add I haven’t spoke to anyone medical just had my report online and deciphered it myself
Thank you all
I’ve had my MRI results back today (after 14weeks!) it states possible Andenomyosis rather then endometriosis which both my specialist and I thought would show. After reading up a bit it states it can only be confirmed if I have a hysterectomy? I had a miscarriage 2 years ago and have been trying to get pregnant for over 7 months after the specialist telling me to try now. I’ve just turned 30. 6th November. I feel so hopeless and confused? Could I get pregnant again? I’m in so much pain all through the month but i really do not want a hysterectomy
should I ask for a laparoscopy? Just to add I haven’t spoke to anyone medical just had my report online and deciphered it myself Thank you all
No, you don't need a hysterectomy to confirm it. That's probably for sending tissue samples off to formally confirm it. But the only cure for adenomyosis is a hysterectomy. Not sure about getting pregnant naturally. I know a lot of people do IVF. But those with adenomyosis do have a higher risk of miscarriage. Those are probably questions for your specialist.Hi everyone
I’ve had my MRI results back today (after 14weeks!) it states possible Andenomyosis rather then endometriosis which both my specialist and I thought would show. After reading up a bit it states it can only be confirmed if I have a hysterectomy? I had a miscarriage 2 years ago and have been trying to get pregnant for over 7 months after the specialist telling me to try now. I’ve just turned 30. 6th November. I feel so hopeless and confused? Could I get pregnant again? I’m in so much pain all through the month but i really do not want a hysterectomy
Thank you all
You can ask for a laparoscopy but it's not going to fix the adenomyosis without a hysterectomy, unless you also have endometriosis in which case they would hopefully do excision removal of endometriosis.
I had a lap done In September and she suspects I have adenomyosis as my uterus is 3 times bigger than it should be but said I would need an mri to diagnose it. So not sure a lap will help you.Hi everyone
I’ve had my MRI results back today (after 14weeks!) it states possible Andenomyosis rather then endometriosis which both my specialist and I thought would show. After reading up a bit it states it can only be confirmed if I have a hysterectomy? I had a miscarriage 2 years ago and have been trying to get pregnant for over 7 months after the specialist telling me to try now. I’ve just turned 30. 6th November. I feel so hopeless and confused? Could I get pregnant again? I’m in so much pain all through the month but i really do not want a hysterectomy
Thank you all
Thank you for replying! I have a call booked for December until then I won’t be able to ask questions and it’s honestly horrible. Wouldn’t the endometriosis have been seen on the MRI?
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Suspects you have it? Mine says “possible adenomyosis” it’s just not definite is it? I only want a laparoscopy to see if any adhesions can be removed so I can get pregnant naturally. I feel like I may need to accept it might not happen
good luck with your MRI! X
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I have Endo and Adeno. Most of the time it's a waste of time getting an MRI. Unless it's deep infiltrating endo, it rarely shows up on scans and ultrasounds. I have Stage 3 endometriosis and none of it showed up on MRIs or ultrasounds. Some of my organs were literally stuck together and it still doesn't show up - mad! The best way to get a formal diagnosis and treatment is surgery with a specialist who knows exactly what to look for.Thank you for replying! I have a call booked for December until then I won’t be able to ask questions and it’s honestly horrible. Wouldn’t the endometriosis have been seen on the MRI?
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Suspects you have it? Mine says “possible adenomyosis” it’s just not definite is it? I only want a laparoscopy to see if any adhesions can be removed so I can get pregnant naturally. I feel like I may need to accept it might not happen
Adenomyosis is easier to diagnose with scans. Mine was found on an internal ultrasound (and also visually in my recent Endo surgery).
Oh wow im so sorry that must be so painful! The organs being stuck together is what concerns me I have symptoms of this such as painful cramps before going toilet (tmi!)
I think I’ll wait for the phone call and see what she thinks my next step should be. I’ve been telling doctors things aren’t right for 7 years now seems like it’s never ending
xYeah, she said due to my heavy bleeding and size of my uterus it’s likely that, I had some lesions removed which they thought was endometriosis but turns out it’s it ugly rare cousin endosalpingiosis.Thank you for replying! I have a call booked for December until then I won’t be able to ask questions and it’s honestly horrible. Wouldn’t the endometriosis have been seen on the MRI?
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Suspects you have it? Mine says “possible adenomyosis” it’s just not definite is it? I only want a laparoscopy to see if any adhesions can be removed so I can get pregnant naturally. I feel like I may need to accept it might not happen
She won’t send me for an mri unless me taking the mini pill doesn’t work
.A lap would likely help if you have lesions removed. I had an area of fused tissue which was causing me chronic back pain, that’s now gone, however unfortunately not long lasting.
Oh wow there’s more?! I haven’t heard of that one beforeYeah, she said due to my heavy bleeding and size of my uterus it’s likely that, I had some lesions removed which they thought was endometriosis but turns out it’s it ugly rare cousin endosalpingiosis.
She won’t send me for an mri unless me taking the mini pill doesn’t work
A lap would likely help if you have lesions removed. I had an area of fused tissue which was causing me chronic back pain, that’s now gone, however unfortunately not long lasting.
that’s ridiculous surely you should be able to request what you feel you need?! I feel like all these problems have such a minimal amount of research and answers so we are just continuously fobbed off. I’ll definitely mention it but like you’ve said everything seems to be a temp fix for all these related issues
I desperately want to fall pregnant even removing adhesions would increase my chance as a brief google search says adenomyosis only gives me a 0.07% chance Thank you for replying. It feels so lonely as no-one knows what any of these words mean or how they affect us other then “oh your periods are a bit bad”
xxYeah, I’d never heard of it either, it’s rare and is tissue from the fallopian tubes rather than endometrial tissue, next to nothing known about it.Oh wow there’s more?! I haven’t heard of that one before
I’ll definitely mention it but like you’ve said everything seems to be a temp fix for all these related issues
Thank you for replying. It feels so lonely as no-one knows what any of these words mean or how they affect us other then “oh your periods are a bit bad”
There’s nothing worse than being told your periods are a bit bad
.Have you asked to be referred to a fertility specialist? They might actually be able to help you.