Endometriosis & Adenomyosis discussion thread

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hi there ❤ I’m quite a bit confused at the moment in regards to endometriosis. I’m currently being examined and treated by a specialised endo team (thank god) and they very much suspect I have it. however, I had a big cyst on my ovary which she thought was an endometrium but it’s gone now. and then I had an MRI which came back completely clear and normal? she says the only thing we can do now is to book me in for a laparoscopic examination to see if there is any endo. I have ALLLL of the symptoms and have had since my period started. it’s only gotten worse since I quit birth control back in 2017. so it all fits perfectly. but… what do I do if I have a lap and there is no endo?! I’m so confused! xxx
Hi! The cyst you had might have been follicular; these are the ones that you can get when you're ovulating and you can experience all kinds of pain because of them, they usually disappear overtime but when they're there they can be really uncomfortable! 💕
 
I need a place to vent and am not looking for a debate or advice.

Depo Provera has been my treatment of choice for Endo symptoms. It is not recommended typically for long term use because of potential bone density loss.

I had to meet with a new doctor today and straight away she asked how long I had been on Depo. I told her, and she told me how I shouldn't be on it long term due to the bone density issues and how bad it is. I felt like I was being lectured and scolded. It was awful. She asked why I hadn't considered other bc (pill, arm patch, coil etc). Depo is the only one that is a bc and also can prevent endo regrowth. I told her that Dr R advised me to stay on Depo post-surgery to suppress regrowth. She looked surprised, almost like she didn't believe it. She then asked if Dr R had suggested Visanne or Lupron. I said no, he's happy with me being on Depo.

I find it absurd that she thought Lupron, which is a chemo drug for breast and prostate cancer and in some people has caused irreversible menopause is a better option than Depo. In my mind potential irreversible menopause is worse than potential in some cases reversible bone density loss. And with Visanne, it is not considered a birth control yet you also can not take hormonal birth control while on it.

I have done all the research I can and the pros of a comfortable painfree lifestyle thanks to Depo outweighs any risk. I take extra supplements and lift weights.
 
@openbook1 Please vent away! That’s so frustrating and crazy about the Lupron! No way would I ever consider that as an option! Keep pushing back and standing your ground.
 
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Hi guys,

So I’ve received a letter today for a colposcopy.

Background: was referred to a fast track 2 week gynaecology (cancer) appointment in February. He looked at my cervix and said everything looked fine but all my symptoms sound like endometriosis, so would write to my GP for a referral to the regular gynaecologist. (He was shocked the GP even sent me to the cancer clinic and said that shouldn’t have happened).

After chasing the appointment up I’ve now received my letter to go for a colposcopy. I have done some research and can see a colposcopy is only to detect abnormal cells? Is this true? Should it be a different appointment for an endo investigation?

Ive been going to the GP’s since I was 14 with these issues (I’m now nearly 30) just sat in tears feeling like I’m going round and round in circles😓
 
Hi guys,

So I’ve received a letter today for a colposcopy.

Background: was referred to a fast track 2 week gynaecology (cancer) appointment in February. He looked at my cervix and said everything looked fine but all my symptoms sound like endometriosis, so would write to my GP for a referral to the regular gynaecologist. (He was shocked the GP even sent me to the cancer clinic and said that shouldn’t have happened).

After chasing the appointment up I’ve now received my letter to go for a colposcopy. I have done some research and can see a colposcopy is only to detect abnormal cells? Is this true? Should it be a different appointment for an endo investigation?

Ive been going to the GP’s since I was 14 with these issues (I’m now nearly 30) just sat in tears feeling like I’m going round and round in circles😓
To detect Endo, you need a laparoscopy ideally with an Endometriosis specialist who can spot some types of Endo that regular gynecologists are not trained to spot. Typically an Endo specialist would also do excision to remove the Endo while doing the lap. Run for the hills if a regular gyn mentions ablation to remove Endo...it often makes it worse, especially if they don't know what they are really looking for. Have you joined the Nancy's Nook page on FB? They have a list of Endo specialists as does the Endo reddit page. Also, if they suggest an ultrasound, that would be useless. An MRI may show some indications of Endo but the gold standard to diagnose is a laparoscopy. Get the name of a specialist close to your area, even Google will bring them up and say to your doctor you want a referral to them. You may have to be firm. Make sure your doctor writes up a good referral letter with ALL your symptoms and any medications you have been on to help with pain... if you get an MRI done and it shows something, include the images and notes.

A colposcopy would be for abnormal cells in your cervix.
 
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To detect Endo, you need a laparoscopy ideally with an Endometriosis specialist who can spot some types of Endo that regular gynecologists are not trained to spot. Typically an Endo specialist would also do excision to remove the Endo while doing the lap. Run for the hills if a regular gyn mentions ablation to remove Endo...it often makes it worse, especially if they don't know what they are really looking for. Have you joined the Nancy's Nook page on FB? They have a list of Endo specialists as does the Endo reddit page. Also, if they suggest an ultrasound, that would be useless. An MRI may show some indications of Endo but the gold standard to diagnose is a laparoscopy. Get the name of a specialist close to your area, even Google will bring them up and say to your doctor you want a referral to them. You may have to be firm. Make sure your doctor writes up a good referral letter with ALL your symptoms and any medications you have been on to help with pain... if you get an MRI done and it shows something, include the images and notes.

A colposcopy would be for abnormal cells in your cervix.
I’ve heard horror stories about Nancy’s Nook so really put off by it😔 but will definitely look for specialists -do you know if you can see an endo specialist via the NHS? If my colposcopy appointment doesn’t lead me anywhere I’ll go back to the GP and complain. As my appointment in February concluded I didn’t have any abnormal cells.

Although I’ve been asking for referrals for years. They just end up sending me for smears and never get any answers. I’m exhausted by it all.
 
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I’ve heard horror stories about Nancy’s Nook so really put off by it😔 but will definitely look for specialists -do you know if you can see an endo specialist via the NHS? If my colposcopy appointment doesn’t lead me anywhere I’ll go back to the GP and complain. As my appointment in February concluded I didn’t have any abnormal cells.

Although I’ve been asking for referrals for years. They just end up sending me for smears and never get any answers. I’m exhausted by it all.
What have you heard about Nancy's Nook? I just used it to get a list of specialists in my area so didn't pay much attention... the specialists are not affiliated to them in any way. It is just a community page.

I am not sure if they will be through the NHS... I am in Canada and it was covered through regular healthcare here as it was at a normal hospital.

This is a clinic in London with specialists: https://www.endometriosisclinic.co.uk/ - this does not seem to be covered by the NHS... but I may be wrong.

Edinburgh: https://www.ed.ac.uk/centre-reprodu...ation-for-patients/what-happens-at-the-clinic

Why are they sending you for smears in regards to Endo? That has nothing to do with it. Sounds like your doctor doesn't know anything and it may be time to look for a new one if possible.

This is a google map of doctors who have done successful endo surgeries, I don't think they are all specialists though. You would need to do research. https://www.google.com/maps/d/viewer?usp=sharing&mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4

Another specialist fb page... less strict than Nancy's Nook apparently. https://www.facebook.com/groups/2285endometropolis/

Reddit page: https://www.reddit.com/r/Endo/

And a UK accredited endo centres... some which look like they'll be through the NHS: https://www.bsge.org.uk/centre/
 
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I’ve heard horror stories about Nancy’s Nook so really put off by it😔 but will definitely look for specialists -do you know if you can see an endo specialist via the NHS? If my colposcopy appointment doesn’t lead me anywhere I’ll go back to the GP and complain. As my appointment in February concluded I didn’t have any abnormal cells.

Although I’ve been asking for referrals for years. They just end up sending me for smears and never get any answers. I’m exhausted by it all.
It is exhausting but at least you're making progress with it albeit slowly! Once you have the diagnosis and they start to treat it it'll be so much easier 💕
Be persistent and keep pushing - the good thing is that they're ruling loads of others things out along the way.
 
What have you heard about Nancy's Nook? I just used it to get a list of specialists in my area so didn't pay much attention... the specialists are not affiliated to them in any way. It is just a community page.

I am not sure if they will be through the NHS... I am in Canada and it was covered through regular healthcare here as it was at a normal hospital.

This is a clinic in London with specialists: https://www.endometriosisclinic.co.uk/ - this does not seem to be covered by the NHS... but I may be wrong.

Edinburgh: https://www.ed.ac.uk/centre-reprodu...ation-for-patients/what-happens-at-the-clinic

Why are they sending you for smears in regards to Endo? That has nothing to do with it. Sounds like your doctor doesn't know anything and it may be time to look for a new one if possible.

This is a google map of doctors who have done successful endo surgeries, I don't think they are all specialists though. You would need to do research. https://www.google.com/maps/d/viewer?usp=sharing&mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4

Another specialist fb page... less strict than Nancy's Nook apparently. https://www.facebook.com/groups/228522852285endometropolis/

Reddit page: https://www.reddit.com/r/Endo/

And a UK accredited endo centres... some which look like they'll be through the NHS: https://www.bsge.org.uk/centre/
Regarding Nancy’s Nook I’ve read forums where people get blocked from the group for talking about “none-Nook Dr’s”, people have been treated badly by the DR’s that Nancy recommends. Just lots of negative reviews which is really off-putting.

Thankyou for the info I will take a look😘

And why are they sending my for smears? My guess is as good as yours. The UK National Health Service is appalling. In so many aspects. But strictly relating to women’s health, they just simply don’t care. The average time for an endo diagnosis in the UK is around 8-10 years. (I was told this by the gynaecologist in February)
It is exhausting but at least you're making progress with it albeit slowly! Once you have the diagnosis and they start to treat it it'll be so much easier 💕
Be persistent and keep pushing - the good thing is that they're ruling loads of others things out along the way.
Thankyou Xx. Yes as much as I’m frustrated I’m glad I can rule out things that are more sinister. As some women aren’t as lucky💔
 
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Yes, I am from the UK and was completely dismissed by any doctor that I saw. It was only when I moved to Canada, I realised how awful the NHS is for diagnosing.
 
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Does anyone know if endometriosis pain can run under your leg and bum as well as in the hips? I feel like an old granny and im only late 30s. Its hard to even sit for long periods due to the discomfort under my left thigh . Just wondering if anyone else has experienced this
 
Does anyone know if endometriosis pain can run under your leg and bum as well as in the hips? I feel like an old granny and im only late 30s. Its hard to even sit for long periods due to the discomfort under my left thigh . Just wondering if anyone else has experienced this
I get this! I hate it, it's impossible to get comfortable and for me almost nothing works to ease the pain but what I try to do is a bit of easy yoga stretching, massage my thighs, lower back and bum area and sit with a hot water bottle tucked inside the back of my pj bottoms (..and if all those fail I take codeine!) You can try these and see if they make it more tolerable! 💕
 
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I get this! I hate it, it's impossible to get comfortable and for me almost nothing works to ease the pain but what I try to do is a bit of easy yoga stretching, massage my thighs, lower back and bum area and sit with a hot water bottle tucked inside the back of my pj bottoms (..and if all those fail I take codeine!) You can try these and see if they make it more tolerable! 💕
Aw thanks v much.
 
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Does anyone know if endometriosis pain can run under your leg and bum as well as in the hips? I feel like an old granny and im only late 30s. Its hard to even sit for long periods due to the discomfort under my left thigh . Just wondering if anyone else has experienced this
Yes absolutely, I get this type of pain a lot! Across my lower back and down the backs of my thighs, it makes my legs feel shaky. I get a lot of general joint pain and fatigue too, all inflammation-based I guess. I was officially diagnosed with Endometriosis and Adenomyosis in March after a laparoscopy and excision - after 10+ years of pain and 7 years after I first went to the doctors!
 
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Yes absolutely, I get this type of pain a lot! Across my lower back and down the backs of my thighs, it makes my legs feel shaky. I get a lot of general joint pain and fatigue too, all inflammation-based I guess. I was officially diagnosed with Endometriosis and Adenomyosis in March after a laparoscopy and excision - after 10+ years of pain and 7 years after I first went to the doctors!
Thank you. Are you on medication or what is your treatment plan?
 
Thank you. Are you on medication or what is your treatment plan?
I take Naproxen, Buscopan and Co-codamol for the pain and I also use a Tens machine. I’ve taken the combined pill (Rigevidon) back to back for 18 months to try and suppress my hormones but it hasn’t done much to be honest. So this week I’m finally giving in and getting the mirena coil fitted - my gynaecologist has been pushing it for months and I’ve not been keen, but I feel at this point there isn’t anything else left for me to try and I need to say I’ve given it a go I think, even if it doesn’t suit me and has to come out!
 
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Hiya - not sure if this is the right place to post this as not endo/adeno but still period / hormone related.

I’ve always always had painful periods, used to be very heavy when I was younger but less heavy now. Used to take days off school and uni due to the pain and heaviness! In the last six months the pain has changed from a painful cramp to a stabbing pain, which basically leaves not able to stand up. It has varied from an hour of pain to a day of it. Also had one instance of the sharp pain/cramp before the period. Anyway 2 weeks ago the pain was awful for 2 whole days and left me being sick with it - which I know some experience on their periods anyway but I’ve never had before. I had to take 2 days off work due to the pain/nausea which was obv not ideal.

Called the Dr at the time and she prescribed pain (Mefanamic acid which I have had before) and said to make an appointment the following week. Finally got round to making an appt and spoke to a nurse practitioner this afternoon. I said that I was always told if my pain was normal then it’s fine but if anything ever changes then it should be looked at.

Nurse practitioner said I have to try the pain to see if they help with the next period and if not I should make another appointment to discuss.

So I just feel a bit fobbed off really. I will obviously have to wait 2 weeks and see if the pain help but I’m just not sure how much to push for tests etc if they don’t help? I always feel like Drs aren’t very willing to do tests and it’s always “just how it is” 😬 does anyone have experience with this?

At the back of my mind I do just wonder if it’s the effect of lockdown, lack of exercise, more comfort food etc. But I have had very stressful times in my life before, not eating properly or exercising and that hasn’t ever affected my cycle so I’m not sure why lockdowns would!?
 
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Hiya - not sure if this is the right place to post this as not endo/adeno but still period / hormone related.

I’ve always always had painful periods, used to be very heavy when I was younger but less heavy now. Used to take days off school and uni due to the pain and heaviness! In the last six months the pain has changed from a painful cramp to a stabbing pain, which basically leaves not able to stand up. It has varied from an hour of pain to a day of it. Also had one instance of the sharp pain/cramp before the period. Anyway 2 weeks ago the pain was awful for 2 whole days and left me being sick with it - which I know some experience on their periods anyway but I’ve never had before. I had to take 2 days off work due to the pain/nausea which was obv not ideal.

Called the Dr at the time and she prescribed pain (Mefanamic acid which I have had before) and said to make an appointment the following week. Finally got round to making an appt and spoke to a nurse practitioner this afternoon. I said that I was always told if my pain was normal then it’s fine but if anything ever changes then it should be looked at.

Nurse practitioner said I have to try the pain to see if they help with the next period and if not I should make another appointment to discuss.

So I just feel a bit fobbed off really. I will obviously have to wait 2 weeks and see if the pain help but I’m just not sure how much to push for tests etc if they don’t help? I always feel like Drs aren’t very willing to do tests and it’s always “just how it is” 😬 does anyone have experience with this?

At the back of my mind I do just wonder if it’s the effect of lockdown, lack of exercise, more comfort food etc. But I have had very stressful times in my life before, not eating properly or exercising and that hasn’t ever affected my cycle so I’m not sure why lockdowns would!?
I am originally from the UK and got no where with doctors there. Only moving to another country did I realise how useless they were and never wanted to try to diagnose anything.
My advice would be, try and find a good gynaecologist in your area (check rate Md) or an endometriosis specialist and tell your doctor that you want a referral. Notice I said tell, not ask.
Be firm. You likely will need to be pushy and it may feel uncomfortable but you know your body best. I would also tell them you want to be sent for an MRI with contrast to check for Endo but the only real way to get a proper diagnosis is through a lap surgery. Don't bother with an ultrasound, they don't show Endo. An MRI can sometimes pick it up.

If they still say no, it's time for a new doctor. If they do send a referral, tell them the symptoms you want listed in your referral note. And by the way, it is never normal to have period pain that makes you sick, no matter what anyone says.
If it makes you sick or feel like you're going to faint then its very possible it is Endo.

Good luck.
 
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I am originally from the UK and got no where with doctors there. Only moving to another country did I realise how useless they were and never wanted to try to diagnose anything.
My advice would be, try and find a good gynaecologist in your area (check rate Md) or an endometriosis specialist and tell your doctor that you want a referral. Notice I said tell, not ask.
Be firm. You likely will need to be pushy and it may feel uncomfortable but you know your body best. I would also tell them you want to be sent for an MRI with contrast to check for Endo but the only real way to get a proper diagnosis is through a lap surgery. Don't bother with an ultrasound, they don't show Endo. An MRI can sometimes pick it up.

If they still say no, it's time for a new doctor. If they do send a referral, tell them the symptoms you want listed in your referral note. And by the way, it is never normal to have period pain that makes you sick, no matter what anyone says.
If it makes you sick or feel like you're going to faint then its very possible it is Endo.

Good luck.
All very true. I had severe period pain my whole teenage years from 13 to 25 i was physically sick every single month, had to take time off school and work, was doubled over in pain, fainted, very heavy periods. I never got diagnosed and am still not , i started to take the pill at 25 which eased all my symptoms, took it for about 10 years and came off it about 5 years ago and have felt pain again since.

Im quite amazed now looking back and im nearly 40 now that no one suggested i got help/assessed/ investigated for my extreme pain when it clearly was not normal as you say and it was having a huge effect on my life. Quite sad really as i really did suffer.
 
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does anyone have night back pain?
i have no back pain during the day or in the gym, but at night i can only sleep a few hours and i get a burning back ache. i finish my nights sleep sitting up in a V shape with legs elevated in bed orstraight out if on the sofa. the pain kind of drains away

my uterus lies on its back against by back so i am wondering if it could be endo. i had a mri scan of the back - no problems with my spine. the physio says my lower back mucles are really strong from the gym and well defined so it can only be something internal

ive had surgery to remove an endo polyp that was huge like grapefruit size at the time the endo had concentrated on making the giant growth so htere was no endo elsewhere in my abdomen, but i am worried that this back pain started about. a year after that surgery.

has anyone else had an endo polyp? mine had a blood supply but that was fixed so it cant grow back in the same place but i guess i could get another one. i just wonder if youre prone to polyps, can you grow them anywhere?