Endometriosis & Adenomyosis discussion thread

[soymilk]

I saw this too finally some hope! I'm struggling today, I have total brain fog ,a headache and exhaustion which are some of my issues and my tummy is very swollen and soar
I am not falling pregnant so when my crappy gynaecologist said oh just get pregnant to get better it upset me so much. Glad they're finally looking beyond contraception as the answer.

I have always said it's a inflammatory disease.

I've just been called for my vaccine. I think due to my endo complications and spending so much time in hospital in the last year. So every cloud

Hope it goes well with your vaccination, i'm in Spain and I think it'll be next year by the time I get mine they're going that slow!

 

[justheretoread99]

Interesting that they mentioned asthma too. I’ve seen that said anecdotally quite often.

I have seasonal asthma. Whenever on a period I can get chest pain and wheeze. Waiting for my appointment to come from my gynae referral but will definitely ask can my lungs be checked if it does turn out I’ve got endo.

 

[Inforapenny]

I have asthma and allergies and eczema. I wonder how many of us have it? Maybe there is a link?
I've always had a terrible immune system with chest infections and ear infections as a kid.
I believe women who have endo have a weaker immune system from childhood which only gets worse as the disease takes hold.

Hope it goes well with your vaccination, i'm in Spain and I think it'll be next year by the time I get mine they're going that slow!

I'm so sorry to hear this.
My husbands parents are in Spain too. But they are British so can come to the UK for the vaccination.

I get hayfever too

 

[Fluffyducks]

Hello guys,

Mind if I join for a bit of advice? I’ve just found this thread after making myself sick with anxiety about my symptoms. I have a 14 month old and prior to having her had irregular, heavy and painful periods. Since having her I went on the mini pill so I don’t bleed apart from the occasional spotting but recently have start to experience lower back and pelvic pain and repeatedly have been found to have blood in my urine without any other signs of infection. I have a kidney ultrasound which was normal so I have been referred to the urologists for investigation. As I don’t have regular bleeding by GP felt sure this wasn’t gynae related and Googling my symptoms has led me down the dark path of all different types of cancer.. that was however until I discovered this thread. I’m at a loss of what to do, the pains in my hips, back and thighs makes me want to vomit and I just feel like I used to feel so normal but now I feel about 80. Any one else has symptoms such as the pains come on quite suddenly?It’s so shite being a woman, I feel so dismissed!xx

 

[soymilk]

Hello guys,

Mind if I join for a bit of advice? I’ve just found this thread after making myself sick with anxiety about my symptoms. I have a 14 month old and prior to having her had irregular, heavy and painful periods. Since having her I went on the mini pill so I don’t bleed apart from the occasional spotting but recently have start to experience lower back and pelvic pain and repeatedly have been found to have blood in my urine without any other signs of infection. I have a kidney ultrasound which was normal so I have been referred to the urologists for investigation. As I don’t have regular bleeding by GP felt sure this wasn’t gynae related and Googling my symptoms has led me down the dark path of all different types of cancer.. that was however until I discovered this thread. I’m at a loss of what to do, the pains in my hips, back and thighs makes me want to vomit and I just feel like I used to feel so normal but now I feel about 80. Any one else has symptoms such as the pains come on quite suddenly?It’s so shite being a woman, I feel so dismissed!xx

Hi! I would try to keep track of your pain like note down when you get it / where / what kind of pain and how long it lasts etc. just to see if you notice a pattern with it. Although the pain usually comes and goes sporadically - I did notice that when I avoid certain types of food I feel better and sometimes after I finish a run the pain I have is so bad I feel like my pelvic area has been winded (sounds odd I know). If you're not happy with how you're feeling I would push for a referral to the gynaecologist at least there they'll be able to physically exam you too!
Hope you feel better soon!

 

[quietlyback]

Hello guys,

Mind if I join for a bit of advice? I’ve just found this thread after making myself sick with anxiety about my symptoms. I have a 14 month old and prior to having her had irregular, heavy and painful periods. Since having her I went on the mini pill so I don’t bleed apart from the occasional spotting but recently have start to experience lower back and pelvic pain and repeatedly have been found to have blood in my urine without any other signs of infection. I have a kidney ultrasound which was normal so I have been referred to the urologists for investigation. As I don’t have regular bleeding by GP felt sure this wasn’t gynae related and Googling my symptoms has led me down the dark path of all different types of cancer.. that was however until I discovered this thread. I’m at a loss of what to do, the pains in my hips, back and thighs makes me want to vomit and I just feel like I used to feel so normal but now I feel about 80. Any one else has symptoms such as the pains come on quite suddenly?It’s so shite being a woman, I feel so dismissed!xx

Hi!!
have you had any blood work done to check for infection markers? Xx

 

[Fluffyducks]

Hi! I would try to keep track of your pain like note down when you get it / where / what kind of pain and how long it lasts etc. just to see if you notice a pattern with it. Although the pain usually comes and goes sporadically - I did notice that when I avoid certain types of food I feel better and sometimes after I finish a run the pain I have is so bad I feel like my pelvic area has been winded (sounds odd I know). If you're not happy with how you're feeling I would push for a referral to the gynaecologist at least there they'll be able to physically exam you too!
Hope you feel better soon!

Thanks for the speedy reply, that’s a brilliant idea to try and work out triggers, somedays I’m completely comfortable and others it feels like my hips and pelvis are being twisted and my lower back stabbed, I also get a shooting pain in my bottom which literally makes me scream then goes. My GP surgery hasn’t physically seen me which is infuriating in itself, everything has been done over the phone. When I think about it, since having my daughter ive had lower back/ hip pains but put that down to pregnancy and birth and carrying round a baby but recently it’s got so much worse. One day is was particularly bad so dipped my urine at work and found it was full of blood. I rung the doctors and they said it must be a kidney stone and sent me for an ultrasound without any other investigation. That was clear and the pain eased but about 2 weeks later came back with a vengeance so I dipped my wee again and still full of blood so I’ve called again. Again no one wants to see me, they’ve asked I drop in a sample and referred me to urology and that was it. She did take a detailed history but since I’m not having periods due to my contraception i suppose it probably didn’t flag up as a gynae issue despite the pelvic pain. I think I’m going to call next week and push for a gynae referral. I have such a mix of symptoms I just feel like my pelvis and all it’s contents are in tatters at the moment!xxxx

Hi!!
have you had any blood work done to check for infection markers? Xx

No nothing, they didn’t even send a urine sample to first time I called as they were sure it was a kidney stone which I knew it wasn’t! I think I’m going to have to call again xx

 

[IndominusRex]

Hi @Fluffyducks I’m laid up with hip, thigh and lower back pain right now. I’ve not been able to work out how it fits into my cycle even though I know it’s related. I’ve also started getting bad pain under my ribs on right side so getting that checked for thoracic endo at next lap.

 

[Fluffyducks]

Hi @Fluffyducks I’m laid up with hip, thigh and lower back pain right now. I’ve not been able to work out how it fits into my cycle even though I know it’s related. I’ve also started getting bad pain under my ribs on right side so getting that checked for thoracic endo at next lap.

So interestingly I’ve had pain below my ribs for about a year but intermittent, also severe flank pain like a Chinese burn around my waist at times, tbh I find all the pains I get just confused me. One minute I’m sure it’s a gall bladder problem, then kidneys, then gynae and bowel. It’s made me hideously anxious as Dr Google never points to endo and always something sinister which has caused me to fear the absolute worst but this thread has been so so eye opening, I just found myself reading everyone’s comments and nodding along like ‘yup I have that’. I’ve always felt period pains in my thighs which always seemed odd to me but now looking back I see so many red flags for endo that I’ve dismissed all these years!

 

[Inforapenny]

Shooting in my bum until I nearly pass out is something I have when I am on my period and ovulating.

There is research coming out that suggests endo could be an auto immune disorder. Endo makes you incredibly inflammed so shooting pains anywhere in your body is possible.

If you are passing blood this is a sign you're unwell. The doctors need to up their game.
I would track ovulation and your periods and every day log symptoms. Make sure you log when you are tired/headaches/migraine/brain fog/log your sleep too.

I have bad UTIs ....some genuine some due to endo rubbing away my bladder nerves. However lots misunderstood and assumed to be bacterial. I've had several kidney Infections as a by product of endo in my bowel. It's difficult to link the 2 and it's only after endo was diagnosed did it all fall in to place. Apparently women with bladder endo are far more susceptible to bladder and thus kidney infections.
When I went for a kidney scan to check for stones it showed absolutely nothing
I was so ill with my last kidney Infection and I was aboard, it was awful.

I've written on here before but it took me to be taken in to hospital with suspected appendicitis and then a confirmed bowel infection to finally be taken seriously.

That's 15 years in the making.

I would push and push. I was lucky in a way as all the blood I pass I was given an emergency cancer check.
Ask for the works. Do not stop until you have ruled out all possible sinister stuff.
It sounds like endo but you need to force them to take you seriously x

 

[Fluffyducks]

Shooting in my bum until I nearly pass out is something I have when I am on my period and ovulating.

There is research coming out that suggests endo could be an auto immune disorder. Endo makes you incredibly inflammed so shooting pains anywhere in your body is possible.

If you are passing blood this is a sign you're unwell. The doctors need to up their game.
I would track ovulation and your periods and every day log symptoms. Make sure you log when you are tired/headaches/migraine/brain fog/log your sleep too.

I have bad UTIs ....some genuine some due to endo rubbing away my bladder nerves. However lots misunderstood and assumed to be bacterial. I've had several kidney Infections as a by product of endo in my bowel. It's difficult to link the 2 and it's only after endo was diagnosed did it all fall in to place. Apparently women with bladder endo are far more susceptible to bladder and thus kidney infections.
When I went for a kidney scan to check for stones it showed absolutely nothing
I was so ill with my last kidney Infection and I was aboard, it was awful.

I've written on here before but it took me to be taken in to hospital with suspected appendicitis and then a confirmed bowel infection to finally be taken seriously.

That's 15 years in the making.

I would push and push. I was lucky in a way as all the blood I pass I was given an emergency cancer check.
Ask for the works. Do not stop until you have ruled out all possible sinister stuff.
It sounds like endo but you need to force them to take you seriously x

Thank you that’s so helpful, it’s such a shame you had to get to the point of being hospitalised to be taken seriously. I think I’m going to call next week and ask for a gynae referral, I feel like my symptoms point to so many different things it needs to be a process of elimination. I really appreciate everyone’s wise words xx

 

[Ilando]

Definitely worth pushing for referrals and tests. The only reason I ended up being diagnosed and treated was because I exaggerated my symptoms and kept moaning. Think they referred me in the end just to shut me up! It worked though, as my gynaecologist sees me every 6 months now and is supporting through my first pregnancy

 

[openbook1]

I just saw this on a local news site... I know some other women are on depo to stop endo symptoms too. What a bleeping joke. I am furious. I will need to talk to my dr and see if the implant is available here. I do not want to be on the pill.

Pfizer's decision to stop making Depo Provera confounds clinician | CityNews Vancouver

The injectable contraceptive Depo-Provera will be in short supply by summer, something a sexual health nurse says will have a "huge impact" on her patients.

www.citynews1130.com

 

[Elisha97]

How did you get your laparoscopy if you had once please?

 

[Ilando]

How did you get your laparoscopy if you had once please?

You need a referral to a specialist from your GP. Sadly, the waiting list tends to be very long. I’ve waited on average 4 months just to see the consultant and then a further 3 months for surgery.

On the positive side, once I’ve got my first referral and was under the consultants care, they have seen me every 6 months and I haven’t had to fight with my GP just to be taken seriously anymore

 

[Elisha97]

You need a referral to a specialist from your GP. Sadly, the waiting list tends to be very long. I’ve waited on average 4 months just to see the consultant and then a further 3 months for surgery.

On the positive side, once I’ve got my first referral and was under the consultants care, they have seen me every 6 months and I haven’t had to fight with my GP just to be taken seriously anymore

thank you! I’ve just been referred to gynaecology so far (that appointment is well overdue) and I’ve had STIs and other issues ruled out but that’s it!

 

[Ilando]

thank you! I’ve just been referred to gynaecology so far (that appointment is well overdue) and I’ve had STIs and other issues ruled out but that’s it!

Sorry- forgot the annoying bit. The consultant insisted on an ultrasound before he’d agree to surgery so that delayed things by about 3 months.

Also worth being prepared for the fact that surgery doesn’t cure anything. I’m now on my third one but at least to relieves the symptoms each time

 

[Elisha97]

Sorry- forgot the annoying bit. The consultant insisted on an ultrasound before he’d agree to surgery so that delayed things by about 3 months.

Also worth being prepared for the fact that surgery doesn’t cure anything. I’m now on my third one but at least to relieves the symptoms each time

thank you, I’ve not had an ultrasound but would be really happy to have one. Hopefully it’s soon

 

[PollyPerks]

Hi all! I thought I would join in on this thread. I was diagnosed with endometriosis 20 years ago when I was 26 via laparoscopy, went on Zoladex injections for six months and since then its been controlled by Microgynon (combined pill). I've had a couple more laparoscopies over the years, and two years ago I had a cervical polyp which was biopsied (thankfully benign) and removed.

The gynae service at my local hospital has not been great over the last few years as I think their funding has been severely cut. I kept being swapped between consultants and discharged if I wasn't keen on having more surgery. Last month I asked to be referred to the specialist Endometriosis clinic at Guy's and I'm waiting for an appointment there. Does anyone here attend that clinic?

My GP sent me for a scan while I wait for the appointment, and it turns out that I now have adeno as well. It's like you can't just have one thing going wrong down there, you have to have the lot! Not sure what to expect now I have adeno - I've been anticipating another laparoscopy on the horizon but I'm not sure if adeno complicates matters.

On the bright side, I'm now 46 and so hopefully towards the end of all this reproductive system faffery - not that I'm looking forward to menopause but if it means an end to pills, pain and surgeries then bring it on!

 

[Keylimepie99]

had an app over the phone with consultants team recently that left me in tears, just kept telling me to take pain, had surgery 4 years ago..... rang my GP in literal tears, and ended up going to my childhood GP for bad pain. Resulting in being sent for an MRI, such a long and painful rd, and I feel like no one takes it seriously, currently in work with right pelvic pain, radiating to hip and in agony!