Endometriosis & Adenomyosis discussion thread

[openbook1]

Hi!

I first had endo aged 14 and finally a lap and excision surgery with an endometriosis specialist last year at 28.

My symptoms:
pelvic, lower back, and hip pain - it felt like my lower body was being crushed. The pain got so bad, I felt like I was going to pass out. It was debilitating.
Really painful thighs.
Needing to pee more.

I have been on Depo 10+ years. When I met with the specialist, I was having periods that were lasting 3 weeks+. He decided the depo was no longer enough and surgery was needed. Even though I was on Depo, I was now getting periods and having awful pain.
I had surgery in summer 2020, it was 4 hours long and he removed and confirmed endo. I have stayed on Depo to prevent any potential regrowth and have had zero pain. The surgeon said if I stay on Depo, I will likely have 11+ years of no pain. If I come off Depo (to have a baby), could be around 8-9 years pain free.

My recovery was really good and fast. By week 4 post surgery, I was exercising again - low impact and no weights. By week 6, I was exercising doing HIIT and light weights. My surgeon said my recovery was likely fast because I was fit and had a strong core prior to surgery. The slimmer you are, the less skin there is for them to cut through so less trauma.

My biggest piece of advice is a find an endo specialist. Not all gynes know what to look for in regards to endo while doing surgery. Make sure you have excision, not ablation as ablation can actually make people's endo worse. I recommend Nancy's Nook FB page which has a list of excision specialists on it.

 

[quietlyback]

Rant away. I'd say IC and endo go hand in hand unfortunately. I completely empathise.
I think my gynae wants to blast some of the endo in that area however the damage has already been done. Until I see my urologists I don't know what the answer is.
I would push also them to give you an MRI for endometriosis.
The anxiety is probably the most disabling thing for me. I go to lectures and talks in a lecture theatre and the stress of making sure you're in a aisle seat. My friends now know to always book an aisle seat for me at the cinema or theatre.
It's been horrendous in lock down if you go for a walk with a friend and it's not in the middle of nowhere. And I want to cry when people point out my bladder issues.

I'm wondering if I can get a toilet badge , my friend has one for her IBD so I'm going to ask the hospital this week.

With your IC are you able to hold your wee in? During certain times of the month I'm incontinent,
If you haven't yet download a fertility app to log your periods and symptoms and ovulation as your bladder will be worse during these times if you have endo

Yeah I agree, I think endometriosis is very much an umbrella term with a lot of associating conditions linked to it unfortunately
Hopefully your urologist will be able to provide some answers for you!
I agree the anxiety is definitely the worst part, it’s constant and sometimes makes me think I’m overdramatising the symptoms
Yes I’ve got a friend who also has a toilet badge for her IC! No I’ve been incontinent a few times too, it’s so embarrassing. Ah thanks for the tip, I use clue at the moment x

 

[Inforapenny]

Hi!

I first had endo aged 14 and finally a lap and excision surgery with an endometriosis specialist last year at 28.

My symptoms:
pelvic, lower back, and hip pain - it felt like my lower body was being crushed. The pain got so bad, I felt like I was going to pass out. It was debilitating.
Really painful thighs.
Needing to pee more.

I have been on Depo 10+ years. When I met with the specialist, I was having periods that were lasting 3 weeks+. He decided the depo was no longer enough and surgery was needed. Even though I was on Depo, I was now getting periods and having awful pain.
I had surgery in summer 2020, it was 4 hours long and he removed and confirmed endo. I have stayed on Depo to prevent any potential regrowth and have had zero pain. The surgeon said if I stay on Depo, I will likely have 11+ years of no pain. If I come off Depo (to have a baby), could be around 8-9 years pain free.

My recovery was really good and fast. By week 4 post surgery, I was exercising again - low impact and no weights. By week 6, I was exercising doing HIIT and light weights. My surgeon said my recovery was likely fast because I was fit and had a strong core prior to surgery. The slimmer you are, the less skin there is for them to cut through so less trauma.

My biggest piece of advice is a find an endo specialist. Not all gynes know what to look for in regards to endo while doing surgery. Make sure you have excision, not ablation as ablation can actually make people's endo worse. I recommend Nancy's Nook FB page which has a list of excision specialists on it.

Two things that stood out to me: depo injection and exercise.

I came off the depo injection approx a year ago and my endo symptoms definitely went through the roof. To the point I ended up in hospital by April.
I believe going back on the depo injection will help but we're trying to conceive.

I'm also a big believer in exercise being a massive help in surpressing my symptoms. Up until lock down I cycled to work everyday (16 miles every day) and I swam and did a type of hardcore circuits .....I was in my best shape (I was due to get married and the fear of being in my wedding dress helped ).
I was at my lowest body weight and highest muscle mass. I believe unbeknown to me this all regulated my illness.

I've put on weight in lock down and lost all motivation to exercise and I've noticed my muscle mass has gone and my symptoms have got so much worse. I need to start doing something because I think my weight gain hasn't helped. Apparently endorphins reduce pain.


My advice is:
*Download a fertility app as this will give you an indication of ovulation and cycle times
*Log all bowel movements. Check for mucus and blood
*Log all bladder movements
*Log all pain where and when and severity out of 10
*Log all food
*Note when you're incontinent (even if it's just a dribble!)
*Have Peppermint tea as a substitute for caffeine
*Log when your periods are and what they are like
*Use reusable sanitary pads...much better for leaks
*Tell work and ask for support
*Take time off when you need it and sleep, your body is exhausted trying to fight the endo
* Be very careful who you talk to about infertility,many if my well.meaning friends are completely insensitive
* Avoid alcohol and smoking
* If you go to the GP do not be fobbed off that you have IBS or a UTI
* Ask GP for a celiac test from GP
* Be careful with infections. I got a terrible angular cellulitis because my body can't fight infection. With endo your body had a lower immune system
* Try and plan around times during ovulation and I also find the first 2 to 3 days of my period are hellish

 

[Faith89]

Hi everyone! I’m so happy to find this thread. I am 31 and was diagnosed with stage 3 endo and adeno last year after a lap & excision surgery. Surgery helped with symptoms for a few months and then everything went back to how it was pre surgery. I am currently on visanne which has been amazing for my pain but does come with its own side effects. I am hoping to come off it soon and conceive. I would love to hear from anyone who conceived with a diagnosis of adenomyosis. There seems to be a lot of research and information about fertility and endo but not so much about fertility and adeno.

 

[just_stir_it_una]

Hi Very happy to have found this thread.
I’ve just been to see an endo specialist team today, and they say they’re 99% certain I have endometriosis, and it has possibly spread to my bladder and bum. They found a cyst on my ovary, and I’ve been referred for an MRI of my abdomen. I was told I should prepare myself mentally for surgery. And honestly, I am tit scared sorry if this is the wrong forum to share that, but I’m just feeling so weird and sad and incredibly overwhelmed!!

 

[IndominusRex]

Hi @just_stir_it_una (great name by the way!) exploratory lap surgery/excision is honestly fine. I understand being scared, it’s a shock! I’m waiting on my second surgery at the moment which I know will include bowel and I’m not looking forward to it, especially with the pandemic, but at the same time I know I will feel loads better once it’s done.

 

[soymilk]

Hi Very happy to have found this thread.
I’ve just been to see an endo specialist team today, and they say they’re 99% certain I have endometriosis, and it has possibly spread to my bladder and bum. They found a cyst on my ovary, and I’ve been referred for an MRI of my abdomen. I was told I should prepare myself mentally for surgery. And honestly, I am tit scared sorry if this is the wrong forum to share that, but I’m just feeling so weird and sad and incredibly overwhelmed!!

Hi! I had a pelvic MRI on Monday, as they assume it's attached to my bowel - waiting for the results now.
Feel free to vent about your pain and symptoms here, we are an Endo safe space!

 

[Ilando]

Hi Very happy to have found this thread.
I’ve just been to see an endo specialist team today, and they say they’re 99% certain I have endometriosis, and it has possibly spread to my bladder and bum. They found a cyst on my ovary, and I’ve been referred for an MRI of my abdomen. I was told I should prepare myself mentally for surgery. And honestly, I am tit scared sorry if this is the wrong forum to share that, but I’m just feeling so weird and sad and incredibly overwhelmed!!

I know it’s scary but I actually think it’s good when they actually find something and that it can be treated with surgery. Can’t speak for every type of surgery obviously but the ones I’ve had have all been keyhole and fairly painless.

 

[Inforapenny]

Hi! I had a pelvic MRI on Monday, as they assume it's attached to my bowel - waiting for the results now.
Feel free to vent about your pain and symptoms here, we are an Endo safe space!

Keep us updated. My main issues are my bowel and Bladder.
I spoke to a temp gynaecology consultant this week and he was just rubbish tbh and was like meh are you sure it isn't crohns.... He hadn't read my medical history he just wanted to get me off the phone. I realise how make or break your consultant can be.
And he was like get pregnant and the pain will go away. Thanks mate.

I found the worst part of all my investigations was the bowel prep for my colonoscopy.
If you can drink that stuff everything else is a breeze, well sort of

 

[Ilando]

Keep us updated. My main issues are my bowel and Bladder.
I spoke to a temp gynaecology consultant this week and he was just rubbish tbh and was like meh are you sure it isn't crohns.... He hadn't read my medical history he just wanted to get me off the phone. I realise how make or break your consultant can be.
And he was like get pregnant and the pain will go away. Thanks mate.

the get pregnant comment shows how much work still need to be done educating so called professionals.I’m currently pregnancy and surprise surprise my endometriosis hasn’t been magically cured. You can see it on every scan I have and I’ve been told I will have to have a c section due to the damage in my hips from it!

 

[soymilk]

Keep us updated. My main issues are my bowel and Bladder.
I spoke to a temp gynaecology consultant this week and he was just rubbish tbh and was like meh are you sure it isn't crohns.... He hadn't read my medical history he just wanted to get me off the phone. I realise how make or break your consultant can be.
And he was like get pregnant and the pain will go away. Thanks mate.

I found the worst part of all my investigations was the bowel prep for my colonoscopy.
If you can drink that stuff everything else is a breeze, well sort of

I had a colonoscopy two years ago so I know all too well about those drinks!
And I know all too well about insensitive male doctors too. It's such a shame there isn't more education about this as it is a lot more common than people think!

 

[JoeBloggs]

Hi I have endo and a history of ovarian cysts. I feel quite lucky as I don’t have many symptoms. I’m sorry some of you have such a hard time. It started with a sore bladder and bloating and they found my cysts. I had one removed in 2017 and they found endometriosis and removed some at the same time. I still get bladder issues and mucus in my bowels - should I be worried? I’ve had some groin pain on the left and some stomach pains but never related them to endo.

I had a wonderful male doctor, who was very much my body my choice for surgery.

I was taken off all hormonal contraception as they believed this was the cause of the cysts and have been on the copper coil ever since. My periods aren’t too much fun but i use cup which makes them easier.

 

[Inforapenny]

Hi I have endo and a history of ovarian cysts. I feel quite lucky as I don’t have many symptoms. I’m sorry some of you have such a hard time. It started with a sore bladder and bloating and they found my cysts. I had one removed in 2017 and they found endometriosis and removed some at the same time. I still get bladder issues and mucus in my bowels - should I be worried? I’ve had some groin pain on the left and some stomach pains but never related them to endo.

I had a wonderful male doctor, who was very much my body my choice for surgery.

I was taken off all hormonal contraception as they believed this was the cause of the cysts and have been on the copper coil ever since. My periods aren’t too much fun but i use cup which makes them easier.

With the Bladder and bowel issues such as pain and mucus I'm a great believer in demanding it be taken seriously so anything really terrible can be ruled out.
I've had scans and biopsies taken so cancer has been ruled out.
If you notice a change in stools or blood and mucus really push for the GP to refer you to those specialists.

Do you log when the pain and mucus are worse?
Mine is around ovulation and my period

the get pregnant comment shows how much work still need to be done educating so called professionals.I’m currently pregnancy and surprise surprise my endometriosis hasn’t been magically cured. You can see it on every scan I have and I’ve been told I will have to have a c section due to the damage in my hips from it!

I'm so sorry to hear this. I'm also furious that pregnancy is the answer.
We are trying to conceive but with no luck. It almost makes it worse to be reminded that having a baby is the silver bullet but it's not going to happen so there is nothing that can be done.

Consultant said its either pain management and surgery or pregnancy. Why the duck is it that black and white.
I'm struggling with inflammation all over my body but nothing can be done apparently.

Has anyone tried acupuncture? I've heard it's good for pain.
Im trying to go down a holistic route.

 

[JoeBloggs]

With the Bladder and bowel issues such as pain and mucus I'm a great believer in demanding it be taken seriously so anything really terrible can be ruled out.
I've had scans and biopsies taken so cancer has been ruled out.
If you notice a change in stools or blood and mucus really push for the GP to refer you to those specialists.

Do you log when the pain and mucus are worse?
Mine is around ovulation and my period

No to be honest I haven’t had a flare up for a good while, I had one earlier this week but I’m trying to drink more water and that can throw me off. Period has been so it’s not that but it’s random.

I think I need to track as I can’t see a pattern but it would be good to see if there is one. I’m trying to track my emotion/binge eating around my period too so perhaps it’s all connected.

I can’t say there has been a change, I’ve had it for years. Always though it was possible IBS but never thought much more. I’ve done samples for the doctor so I’m happy it’s not anything more but very interested that that could be endo related.

 

[Inforapenny]

Definitely get a fertility app to track ovulation and your cycle. This basically got me my diagnosis.
I think ibs is always rolled out as the answer to everything, it's a lazy diagnosis.
About 15 years ago doc's said it was IBS but got progressively worse.
I get so ill now I've ended up in hospital with bowel complications due to endo . So it's really important your doc doesn't dismiss it as just IBS because you could be helped now before it gets too chronic.
I don't want to scare anyone I just feel passionately that women's health is always side lined and if I'd got help 10+ years ago I wouldn't be in this situation.

Water and peppermint tea help me and exercise x

 

[just_stir_it_una]

thank you for your replies, it warms my heart! so sad to hear what you're all going through I’m still pretty confused by the whole thing, but I’m happy to hear keyhole surgery hopefully won’t be too bad. in some way, it’s quite a relief to know what has been going on hasn't just been me imagining things. I’ve heard so many doctors through the last 10 years saying “you’ve just got really bad periods, ok”

can they only fully 100% confirm that it's endo once they have done the keyhole surgery?

 

[Ilando]

can they only fully 100% confirm that it's endo once they have done the keyhole surgery?

that’s what I’ve always been told. You can see mine when I go for an ultrasound but I think that’s because we already know what we’re looking at if that makes sense x

 

[Inforapenny]

thank you for your replies, it warms my heart! so sad to hear what you're all going through I’m still pretty confused by the whole thing, but I’m happy to hear keyhole surgery hopefully won’t be too bad. in some way, it’s quite a relief to know what has been going on hasn't just been me imagining things. I’ve heard so many doctors through the last 10 years saying “you’ve just got really bad periods, ok”

can they only fully 100% confirm that it's endo once they have done the keyhole surgery?

I was diagnosed through MRI scan and my history plus colonoscopy.
The MRI was really detailed but underestimated how 'riddled' I am x

 

[Vee6]

thank you for your replies, it warms my heart! so sad to hear what you're all going through I’m still pretty confused by the whole thing, but I’m happy to hear keyhole surgery hopefully won’t be too bad. in some way, it’s quite a relief to know what has been going on hasn't just been me imagining things. I’ve heard so many doctors through the last 10 years saying “you’ve just got really bad periods, ok”

can they only fully 100% confirm that it's endo once they have done the keyhole surgery?

I'm pretty sure its diagnosed during surgery.
My story is pretty similar...
In 2014 after struggling to concieve I had a lap and dye (keyhole surgery) and when I came round after the surgeon said i had endo and had i known? She then asked me what pain killers i took during my period and i said "paracetamol, coedine, brufen and buscapan. and that would give me a pain free couple of hours at most". she just looked at me and said thats not normal. how was i to know? its not something people talk about, i asumed it was the same for all women. She then said she had cleared it out and i should expect it to come back in about 5 years. I had two babies (IVF) and then my periods improved sooo much!! It's only recently that I feel it's coming back. My periods are soo heavy now, the pain is nothing like it used to be, however it's getting steadily worse. I am struggling to lose weight, i really feel its related.
I don't know what ti take to maybe slow it down. i tried the pill a couple of year ago, and i gained weight and was grumpy. Does anyone take anything that helps?

 

[Readread]

I had an ultrasound last week after suffering horrible stomach cramps after a bout of food poisoning and gastroenteritis at Xmas time. I have a copper coil which I believe became dislodged as I couldn't feel the strings. So GP referred me for ultrasound. Coil is dislodged and the ultrasound showed endometriosis too. I don't really know much about it but my Mum has it too. I'm waiting for my gynecologist appointment now and also waiting for my coil to be removed!