Endometriosis & Adenomyosis discussion thread

[Pacho]

Hi all! And thank you for starting this thread
I’ve been referred to the gynaecologist to investigate if I have endo. I’m 99% sure I’ve had it since being a teen.
I’m 27 and have been going to the GP’s and A&E since I was 14 with my symptoms.

My symptoms are: incredibly heavy and irregular periods, a mix of constipation and diarrhoea, pain in abdomen, lower back and thighs, painful sex, bleeding after sex, spotting, nausea and vomiting for hours on end whilst on my period, low moods, fatigue, hair on my lower back and constant uti’s.

I was referred back when I was 18 but it was an awful experience. It was my first time going and in the room was 2 male medical students which immediately made me uncomfortable. (I’d be totally fine with that now but at 18 it was very off putting) I told the gynaeo my symptoms and she just shook her head and accused me of making myself sick to lose weight. She then made me undress behind a curtain and told me to lay on the bed. She didn’t tell me what she was going to do and pulled out a huge metal speculum and said “I need to swab you for sexually transmitted infections”. The speculum was the most excruciating pain I’ve ever felt and burst into tears and couldn’t go through with it any longer. She shook her head and said “you really need your swabs doing”. She sent me for an MRI which came back clear and didn’t hear anything else again.
I later researched and read MRI scans can’t even pick up endo.

I’ve since managed my symptoms with the mini pill (continuous) and mentioned my symptoms in passing when I had my last pill check. A couple of appointments later and I’ve finally been referred back. I feel confident enough now that I’m almost 30 I won’t cry and I will demand a laparoscopy until I am blue in the face.
I am sorry for the essay and thank you if you are still reading, but my main questions are:

- Has anyone else had an experience like mine at 18?
- Will my next appointment be similar? Will they just want to swab me for sti’s?
- How long did it take you from initial referral to diagnosis?

Thank you and sending lots of love to you guys x

Hi

I am 30 and was diagnosed with stage 3 via laparoscopy 2019 after 12 years of being told 'Periods are painful, deal with it'. The surgery went well and along with taking supplements from my naturopath, getting monthly acupuncture & chinese herbs I am managing very well thank god. Having said that since the surgery I was very nervous having people near my stomach or lady area.. Having to get smears/paps was an ordeal because I literally would clam up anytime anyone went near me. We are currently with a fertility clinic and I have to get transvaginal scans 4 times a month, once is day 3 of my cycle. It hasn't been pleasant. I remind the gyne everytime to go easy and be gentle as with endo I am more sensitive than most women down there. Last month I had the most horrific experience of my life with my second IUI. I will not get into detail as I do not want to put anyone off as my experience is not how it should of been.

Basically I completely understand where you are coming from not wanting to be examined after a traumatic experience. The only thing that can diagnose endo is a laparoscopy. I am not sure what country you are in but there is a blood test called CA125. It is a cervical cancer marker test, but studies have shown women with endo have an elevated level of this. (Not elevated to a cancer level, but not zero like an endo free lady. Example my last score was 23 as the endo is still on my bladder and bowel) You could ask for this, but again it is not a diagnosis. The gyne that finally diagnosed me did not do a single other test on me. Based on my symptoms he booked me for a laparoscopy. But during the 12 years before that I had countless referrals, all of which I had transvaginal scans and ultrasounds, even though they are pointless and don't show up endo. I've never had any swabs etc during any referral tests. I hope this helps

Hi all. Im 29, 30 in November.

Been suffering like you all since I was a teenager, years of fighting with doctors and consultants for a diagnosis to be told at 21 it was all in my head. Fast forward 2 years and my current partner brought me to a&e after passing out due to pain 3 times and a cyst was found.

I was diagnosed through surgery 3 weeks later with stage 2. I have had 2 surgeries total needing another currently.

I had a missed miscarriage last may and currently ttc.

I have been in agony the past 2 days but today I am dying I have tried every painkiller in the house and hot water bottles and nothing is easing it. Im at my a&e trip point but due to covid I'm scared to attend..

XOXO

Oh I do not miss those trips to a&e with the pain! The absolute worst.
Best of luck trying to conceive. We are in the same boat. A year trying with a fertility clinic. Please have your progesterone levels checked to see your estrogen to progesterone ratio. Both should be checked on day 19-21 of your cycle.

Us women with endo are high risk for miscarriage due to the fact we are estrogen dominant and usually have a poor estrogen to progesterone ratio. Progesterone is needed to sustain a pregnancy. Every month after ovulation is confirmed I have to take progesterone suppositories to help get and sustain a pregnancy. I have been told if we do conceive I will need to continue this until at least 13 weeks. You may already know all this so please ignore if so. Baby dust to you <3

 

[Elisha97]

Hi, I just wanted your thoughts. I’m in my early 20s and I feel like I’m being fobbed off. I’m hopefully going to go down the route of having endometriosis looked at. I’ve never been pregnant and have no kids. Previously I’ve had loads of tests and the doctors say I have IBS and a colonoscopy ruled everything out. I am constantly in pain and get loads of random stabbing pains in my stomach area and on a few different occasions I’ve been sent to hospital to rule out serious illnesses from crippling pain that came on suddenly. I have bloating constantly and my pain can be anywhere in my mid section and the type and intensity of pain varies. I wondered if it sounded like I have endo to any of you please. My smear showed HPV but otherwise normal

My symptoms are:

Pain all over my midsection and in my bum etc

Heavy periods

Periods passing clots or tissue

Generally always unwell

Random pains

Very painful periods

Stabbing pains that are sometimes so painful I can’t move

Back and thigh pain

Pain and bleeding after sex

Issues with inserting tampons

Fatigue

IBS

Bloating

Difficulty weeing

Frequently weeing

Nausea

Shoulder pain

Allergies and intolerances

Frequent infections

Headaches and confusion

Painful bowel movements

Infections in bladder

Mucus and blood in stools

Sweating

Illness around periods

Severe mood changes

Blood in urine previously

UTIs

 

[soymilk]

Hi, I just wanted your thoughts. I’m in my early 20s and I feel like I’m being fobbed off. I’m hopefully going to go down the route of having endometriosis looked at. I’ve never been pregnant and have no kids. Previously I’ve had loads of tests and the doctors say I have IBS and a colonoscopy ruled everything out. I am constantly in pain and get loads of random stabbing pains in my stomach area and on a few different occasions I’ve been sent to hospital to rule out serious illnesses from crippling pain that came on suddenly. I have bloating constantly and my pain can be anywhere in my mid section and the type and intensity of pain varies. I wondered if it sounded like I have endo to any of you please. My smear showed HPV but otherwise normal

My symptoms are:

Pain all over my midsection and in my bum etc

Heavy periods

Periods passing clots or tissue

Generally always unwell

Random pains

Very painful periods

Stabbing pains that are sometimes so painful I can’t move

Back and thigh pain

Pain and bleeding after sex

Issues with inserting tampons

Fatigue

IBS

Bloating

Difficulty weeing

Frequently weeing

Nausea

Shoulder pain

Allergies and intolerances

Frequent infections

Headaches and confusion

Painful bowel movements

Infections in bladder

Mucus and blood in stools

Sweating

Illness around periods

Severe mood changes

Blood in urine previously

UTIs

Hi! A lot of your symptoms are similar to those I have / have had. They come and go and the pain ranges from manageable to me staying in bed for the whole day. I would make an appointment with your gp / gynaecologist to discuss the idea of endometriosis with them and hopefully they'll test you!
Good luck with whatever you chose to do and in the meantime come back here to let us know how you're getting on! Hearing other people's stories really make you feel like you're not alone in your pain and the tips being passed around the group are really helpful

 

[Elisha97]

Hi! A lot of your symptoms are similar to those I have / have had. They come and go and the pain ranges from manageable to me staying in bed for the whole day. I would make an appointment with your gp / gynaecologist to discuss the idea of endometriosis with them and hopefully they'll test you!
Good luck with whatever you chose to do and in the meantime come back here to let us know how you're getting on! Hearing other people's stories really make you feel like you're not alone in your pain and the tips being passed around the group are really helpful

thank you for your help! I forgot to mention I’ve forced my GP to refer me, they wanted to fob me off saying that I had to wait for results from gastro to come back even though I wasn’t waiting for results?! I’ve had cancer, bowel diseases, STI’s and other things ruled out. My mum has fibroids as well.

 

[Interested21]

Hi

I am 30 and was diagnosed with stage 3 via laparoscopy 2019 after 12 years of being told 'Periods are painful, deal with it'. The surgery went well and along with taking supplements from my naturopath, getting monthly acupuncture & chinese herbs I am managing very well thank god. Having said that since the surgery I was very nervous having people near my stomach or lady area.. Having to get smears/paps was an ordeal because I literally would clam up anytime anyone went near me. We are currently with a fertility clinic and I have to get transvaginal scans 4 times a month, once is day 3 of my cycle. It hasn't been pleasant. I remind the gyne everytime to go easy and be gentle as with endo I am more sensitive than most women down there. Last month I had the most horrific experience of my life with my second IUI. I will not get into detail as I do not want to put anyone off as my experience is not how it should of been.

Basically I completely understand where you are coming from not wanting to be examined after a traumatic experience. The only thing that can diagnose endo is a laparoscopy. I am not sure what country you are in but there is a blood test called CA125. It is a cervical cancer marker test, but studies have shown women with endo have an elevated level of this. (Not elevated to a cancer level, but not zero like an endo free lady. Example my last score was 23 as the endo is still on my bladder and bowel) You could ask for this, but again it is not a diagnosis. The gyne that finally diagnosed me did not do a single other test on me. Based on my symptoms he booked me for a laparoscopy. But during the 12 years before that I had countless referrals, all of which I had transvaginal scans and ultrasounds, even though they are pointless and don't show up endo. I've never had any swabs etc during any referral tests. I hope this helps



Oh I do not miss those trips to a&e with the pain! The absolute worst.
Best of luck trying to conceive. We are in the same boat. A year trying with a fertility clinic. Please have your progesterone levels checked to see your estrogen to progesterone ratio. Both should be checked on day 19-21 of your cycle.

Us women with endo are high risk for miscarriage due to the fact we are estrogen dominant and usually have a poor estrogen to progesterone ratio. Progesterone is needed to sustain a pregnancy. Every month after ovulation is confirmed I have to take progesterone suppositories to help get and sustain a pregnancy. I have been told if we do conceive I will need to continue this until at least 13 weeks. You may already know all this so please ignore if so. Baby dust to you <3

Hey thank you I will look into that.

 

[Ilando]

I realise this is a sensitive post given that endometriosis can cause issues with fertility etc so I hope I don’t offend anyone (I’ve had my fair share of fertility issues too).

I’m 5 months pregnant with my first. My last surgery for endo was 18 months ago. Recently, I can feel the familiar pain in my left hip is back and I know it’s endo reoccurring. It’s not a problem in daily life walking, sitting etc but causes lots of pain when I go to the loo!

It’s making me so nervous as there is no way I can give birth naturally. The strain of going to the loo (tmi!) is enough to make me feel faint when it’s at its worst. I’m dreading mentioning it to my consultant as I know they’ll be really dismissive like they usually are with everything endo related.

No real reason for my post other than to vent x

 

[soymilk]

I realise this is a sensitive post given that endometriosis can cause issues with fertility etc so I hope I don’t offend anyone (I’ve had my fair share of fertility issues too).

I’m 5 months pregnant with my first. My last surgery for endo was 18 months ago. Recently, I can feel the familiar pain in my left hip is back and I know it’s endo reoccurring. It’s not a problem in daily life walking, sitting etc but causes lots of pain when I go to the loo!

It’s making me so nervous as there is no way I can give birth naturally. The strain of going to the loo (tmi!) is enough to make me feel faint when it’s at its worst. I’m dreading mentioning it to my consultant as I know they’ll be really dismissive like they usually are with everything endo related.

No real reason for my post other than to vent x

Congratulations on your pregnancy, this is always great news!
Please be open with your consultant regardless of however you think they may react, it's important for them to have all of the information should they need to help you

 

[Libbyaugust737]

I am so happy there's are thread for this. I had stave 4 endometriosis, severe Adenomyosis and suspected PCOS. Having recurrent miscarriage investigations so hoping they can day yes or no to PCOS.

I've had 2 laparoscopies and a year ago had a baby so had a year of little to no pain. Within a few months the pain was back with vengeance.

How does everyone handle pain? So happy this thread is here. I'm thinking of doing a blog but don't know if it would be worth it. Someone other than Lauryn Goodman needs to talk about it haha.

 

[Faith89]

I am so happy there's are thread for this. I had stave 4 endometriosis, severe Adenomyosis and suspected PCOS. Having recurrent miscarriage investigations so hoping they can day yes or no to PCOS.

I've had 2 laparoscopies and a year ago had a baby so had a year of little to no pain. Within a few months the pain was back with vengeance.

How does everyone handle pain? So happy this thread is here. I'm thinking of doing a blog but don't know if it would be worth it. Someone other than Lauryn Goodman needs to talk about it haha.

You should definitely start a blog! When I was diagnosed with adenomyosis I trawled the Internet looking for information from real women who had experience with it and not just research papers or general information. There is very little out there in my experience. I desperately wanted to hear from people who had managed to conceive with both endo and adeno as its something I’m so worried about.

 

[soymilk]

I am so happy there's are thread for this. I had stave 4 endometriosis, severe Adenomyosis and suspected PCOS. Having recurrent miscarriage investigations so hoping they can day yes or no to PCOS.

I've had 2 laparoscopies and a year ago had a baby so had a year of little to no pain. Within a few months the pain was back with vengeance.

How does everyone handle pain? So happy this thread is here. I'm thinking of doing a blog but don't know if it would be worth it. Someone other than Lauryn Goodman needs to talk about it haha.

it's a great idea. I think the more stories people hear, the more awareness it brings. I've watched almost every video / interview etc I could find and it helped me so much as I sat there nodding along saying "omg this is what I feel like, this is what happens to me!"

 

[IndominusRex]

I think there's a lot more awareness of Endo now than there was 10, 20 years ago, but you're right it's still really hard to find information about Adeno, and especially how they coexist. I'm sure a blog would help lots of other women!

 

[Libbyaugust737]

I did it. I've set it up and posted my first welcome post. I've also got an email address for it so people can post their stories - anonymously if they prefer - so that I can post if people email. Get different stories and experiences out there.

thelittleyellowribbonxx.wordpress.com

 

[Inforapenny]

I did it. I've set it up and posted my first welcome post. I've also got an email address for it so people can post their stories - anonymously if they prefer - so that I can post if people email. Get different stories and experiences out there.

thelittleyellowribbonxx.wordpress.com

Ah thank you can we post on your blog?
My issues are bowel and Bladder which I find there is little info on so please if you need any info in these areas just ask

I'm really struggling today. I had about 3 hours of sleep. My bladder is in so much pain up all night and same old feeling like a severe UTI I can't keep any urine in.
Feeling sorry for myself today.

Has anyone got help from work? I'm looking to see if I can work from hope when unwell. It's not every month just when I'm so unwell I can't move and need my own toilet etc
I also can't sit because of my rectal pain.
I'm lucky as most of the time I'm in an office. I wondered if anyone had flexi work when you have a flare up?

 

[quietlyback]

Really sorry for TMI. Does anyone else have the toilet bowl full of blood after passing stools? It’s not a period it’s just from the back end
And if so is this because it’s endo on your bowel?

 

[Inforapenny]

Really sorry for TMI. Does anyone else have the toilet bowl full of blood after passing stools? It’s not a period it’s just from the back end
And if so is this because it’s endo on your bowel?

Yes! I have this during ovulation and when I'm on my period. I think most women will know if it's period blood or back passage blood
Do you get rectal pain too? And do you pass mucus as well? This is a sign that your bowel is inflamed.
Do definitely let your GP know because passing blood it not right x

 

[quietlyback]

Yes! I have this during ovulation and when I'm on my period. I think most women will know if it's period blood or back passage blood
Do you get rectal pain too? And do you pass mucus as well? This is a sign that your bowel is inflamed.
Do definitely let your GP know because passing blood it not right x

Yes rectal pain and mucus too, it’s awful isn’t it. Ah okay thank you, I’m waiting for a phone appointment today so I’ll bring it up! X

 

[Readread]

I have my first gyneo appointment tomorrow, feeling a bit nervous! I mentioned before that I have a copper coil in the wrong place which I'm assuming they'll take out. Then discussion about what the ultrasound showed a couple of weeks ago.

Has anyone ever went from having the copper coil to the mirena coil to help relieve symptoms of endo? I'm thinking of asking to switch, you don't get a period with mirena I believe.

 

[Inforapenny]

Yes rectal pain and mucus too, it’s awful isn’t it. Ah okay thank you, I’m waiting for a phone appointment today so I’ll bring it up! X

Good luck. My advice is log everything in a diary to have specific dates and evidence

I have my first gyneo appointment tomorrow, feeling a bit nervous! I mentioned before that I have a copper coil in the wrong place which I'm assuming they'll take out. Then discussion about what the ultrasound showed a couple of weeks ago.

Has anyone ever went from having the copper coil to the mirena coil to help relieve symptoms of endo? I'm thinking of asking to switch, you don't get a period with mirena I believe.

I haven't had the coil. I'm too chicken and heard some horror stories. I was on the depo injection and it worked amazingly well. I then had the implant in my arm and that was OK but I didn't like it in my arm it was like a match stick poking out!

I'm trying to conceive so obvs can't have anything but I've noticed my symptoms are absolutely horrendous without contraception

 

[Readread]

Good luck. My advice is log everything in a diary to have specific dates and evidence


I haven't had the coil. I'm too chicken and heard some horror stories. I was on the depo injection and it worked amazingly well. I then had the implant in my arm and that was OK but I didn't like it in my arm it was like a match stick poking out!

I'm trying to conceive so obvs can't have anything but I've noticed my symptoms are absolutely horrendous without contraception

I've had two copper coils, first one fell out and when getting the second one in I was wincing in pain! It was genuinely awful!
I'm on a prescription for Naproxen at the moment after I fractured my ankle so I'm planning on taking it before I go to my appointment in anticipation of getting a new IUD put in so hopefully it will relieve the pain a bit!
I honestly have no idea what to expect at my appointment tomorrow though.

One of my friends had the injection and it used to move about in her arm, freaked me out!

 

[JoeBloggs]

I have my first gyneo appointment tomorrow, feeling a bit nervous! I mentioned before that I have a copper coil in the wrong place which I'm assuming they'll take out. Then discussion about what the ultrasound showed a couple of weeks ago.

Has anyone ever went from having the copper coil to the mirena coil to help relieve symptoms of endo? I'm thinking of asking to switch, you don't get a period with mirena I believe.

I went the other away around with an implant in between. I loved it as I got no periods I was also unaware of any issues of endo or cysts until my implant and constant bleeding, but I decided to give myself a hormone break and go for the copper this time. I might go back to it once my 5 years is up.