Heavy painful periods... no diagnosis yet!

[WatchingandJudging]

Hello all,

I wondered if anyone has experienced the same/ similar to me and whether anything has helped.

In a nutshell, I have always suffered with horrendously painful periods every month and the contraceptive pill helped slightly. I came off it about 3 years ago due to other side effects but suffer still with my periods. Going back on the pill isn’t an option as it affected my moods and we are TTC

My symptoms are:
Hormonal acne around chin and jaw
Swollen stomach area
Bloating
Swollen feet often
Heavy periods
Pain causing me to feel faint, sweat, vomit and scream in agony!
Upset stomach at time of the month
Cramps which feel like I’m being sliced open or stabbed!
Periods last 2 days but pain is intense and it’s affecting my work- I’m off sick every month without fail

I’ve been pushing for further tests, my bloods were taken on day 21(or as close as I could get to) all came back ok, I’ve had a pelvic internal scan which showed ovulation but struggled to find my left ovary?!

No signs of cysts or masses from initial feedback from scan but I was told the internal scan doesn’t show endometrial tissue or polyps- is this true and what next?

I don’t think I can keep up with this monthly pain it is causing so much distress!! I’m on mefanamic acid and trans something, neither are helpful.

Has anyone had anything similar? Has anything helped and what should I do? Xx

 

[Guacamole123]

Oh I feel you!!! I get the exact same symptoms. In fact, right now I’m sat in the bath trying to ease off the period pain and trying not to rush to the toilet . I’m convinced it’s endometriosis that I have, but doctors are quite frankly useless at diagnosing problems like this. I’m sick of being told to go back on the pill and try naproxen for pain relief because I know these things are just masking the pain, and I want to know what the root cause of the pain is!!!

 

[sarahboo]

Oh I feel your pain, suffered badly for years & no answers from Dr's. I'm on the pill now which has massively helped but I've had a lot of abnormal bleeding & pelvic pain. Tests & scans never really showed anything so I had diagnostic surgery last year which showed endometriosis scarring on one side but my gynaecologist wasn't concerned, discharged me & said the pill I was on was probably treating it. Fast forward to this year, I had my routine smear & I had abnormal cells again which I had to have removed, now waiting to see if it's been successful but I have had less pain & I've only bled once or twice since so I think mine is more linked to that. I don't doubt I have endometriosis scarring because I've had all of the symptoms & for years, I just don't like saying I have endo because I feel like my gyny sort of dismissed it after surgery & said its fine now because of the pill. It took me years to get to be under gyny and for them to investigate, but keep pushing because there's surgery that can be done to help. My friend has terrible endo & no joke our GP told her to have a baby because that'd fix it, after lots of emergency admissions to hospital she finally had surgery to remove it & so far her symptoms have improved massively. Shame that it takes such pushing to get an answer from the Dr's, seem they are happy with pain relief or the pill.

Edited to add- I actually hate being on the pill but I'm so scared of coming off of it because I know my periods will be heavy, I'll be back to being in agony & being so ill with them I wish there was more that could be done. I'm also unsure if my painful periods are linked to abnormal cells because I've suffered from painful periods since I started, I was always sick & fainted with them. I definitely think you should push for a gyny referral so they can investigate further, it's awful you have to suffer xx

 

[Scvee13]

Hello all,

I wondered if anyone has experienced the same/ similar to me and whether anything has helped.

In a nutshell, I have always suffered with horrendously painful periods every month and the contraceptive pill helped slightly. I came off it about 3 years ago due to other side effects but suffer still with my periods. Going back on the pill isn’t an option as it affected my moods and we are TTC

My symptoms are:
Hormonal acne around chin and jaw
Swollen stomach area
Bloating
Swollen feet often
Heavy periods
Pain causing me to feel faint, sweat, vomit and scream in agony!
Upset stomach at time of the month
Cramps which feel like I’m being sliced open or stabbed!
Periods last 2 days but pain is intense and it’s affecting my work- I’m off sick every month without fail

I’ve been pushing for further tests, my bloods were taken on day 21(or as close as I could get to) all came back ok, I’ve had a pelvic internal scan which showed ovulation but struggled to find my left ovary?!

No signs of cysts or masses from initial feedback from scan but I was told the internal scan doesn’t show endometrial tissue or polyps- is this true and what next?

I don’t think I can keep up with this monthly pain it is causing so much distress!! I’m on mefanamic acid and trans something, neither are helpful.

Has anyone had anything similar? Has anything helped and what should I do? Xx

I got referred for an ultra sound and I have fibroids. Was experiencing similar symptoms to this

 

[Pussy Galore]

Things like endometriosis can only be diagnosed by a laparoscopy. I spent over 5 years pushing for more tests. Dont let doctors fob you off, you know your own body more than anyone else.
Happy to answer any questions if I can help x

 

[bubbletea123]

Are you in the UK? I think you need to see a gynecologist, not your regular doctor. Ask for a referral. You'll probably have to be pushy, a regular thing I found with the NHS.

I have endometriosis and it took 10 years to diagnose. In fact, I am from the UK and Drs there were useless, it wasn't until I moved to Canada that I had someone listen. I got my own gynecologist who referred me to an endometriosis specialist. 1 in 10 women have it and it sounds like what you have.

Ultrasounds won't show it but an MRI can although rare. Luckily mine showed on an MRI. You can request an MRI as it may show. The only way to properly diagnose is with lap surgery. And then have excision surgery to cut it out, laser surgery is NOT recommended. If you do have endo, avoid doctors that do laser surgery. The laser can actually spread the endo and make it worse than before.

I have been on Depo for 10 years but it isn't cutting it anymore. I am due to have surgery this year with an endo specialist. If a dr tells you to get pregnant as that helps, do not listen to them. For some women, pregnancy makes endo worse.

Can I suggest some groups?
https://www.facebook.com/groups/2285NancysNookEndoEd/about/ - they have a list of specialists
https://www.reddit.com/r/Endo/ - map of specialists

Reddit - Dive into anything

www.reddit.com

 

[WatchingandJudging]

Oh I feel you!!! I get the exact same symptoms. In fact, right now I’m sat in the bath trying to ease off the period pain and trying not to rush to the toilet . I’m convinced it’s endometriosis that I have, but doctors are quite frankly useless at diagnosing problems like this. I’m sick of being told to go back on the pill and try naproxen for pain relief because I know these things are just masking the pain, and I want to know what the root cause of the pain is!!!

Oh bless you, it’s just awful isn’t it?! Me too, couldn’t have explained it better myself and contraceptive pills come with their own side effects which aren’t great

Oh I feel your pain, suffered badly for years & no answers from Dr's. I'm on the pill now which has massively helped but I've had a lot of abnormal bleeding & pelvic pain. Tests & scans never really showed anything so I had diagnostic surgery last year which showed endometriosis scarring on one side but my gynaecologist wasn't concerned, discharged me & said the pill I was on was probably treating it. Fast forward to this year, I had my routine smear & I had abnormal cells again which I had to have removed, now waiting to see if it's been successful but I have had less pain & I've only bled once or twice since so I think mine is more linked to that. I don't doubt I have endometriosis scarring because I've had all of the symptoms & for years, I just don't like saying I have endo because I feel like my gyny sort of dismissed it after surgery & said its fine now because of the pill. It took me years to get to be under gyny and for them to investigate, but keep pushing because there's surgery that can be done to help. My friend has terrible endo & no joke our GP told her to have a baby because that'd fix it, after lots of emergency admissions to hospital she finally had surgery to remove it & so far her symptoms have improved massively. Shame that it takes such pushing to get an answer from the Dr's, seem they are happy with pain relief or the pill.

Edited to add- I actually hate being on the pill but I'm so scared of coming off of it because I know my periods will be heavy, I'll be back to being in agony & being so ill with them I wish there was more that could be done. I'm also unsure if my painful periods are linked to abnormal cells because I've suffered from painful periods since I started, I was always sick & fainted with them. I definitely think you should push for a gyny referral so they can investigate further, it's awful you have to suffer xx

Thanks so much for sharing, I too had CIN 3 about 10 years ago and had biopsy removal. I hope all comes back ok for your recent one. I will push, as I need answers and some sort of validation because right now I feel like a time waster and that no medical professional believes me

Are you in the UK? I think you need to see a gynecologist, not your regular doctor. Ask for a referral. You'll probably have to be pushy, a regular thing I found with the NHS.

I have endometriosis and it took 10 years to diagnose. In fact, I am from the UK and Drs there were useless, it wasn't until I moved to Canada that I had someone listen. I got my own gynecologist who referred me to an endometriosis specialist. 1 in 10 women have it and it sounds like what you have.

Ultrasounds won't show it but an MRI can although rare. Luckily mine showed on an MRI. You can request an MRI as it may show. The only way to properly diagnose is with lap surgery. And then have excision surgery to cut it out, laser surgery is NOT recommended. If you do have endo, avoid doctors that do laser surgery. The laser can actually spread the endo and make it worse than before.

I have been on Depo for 10 years but it isn't cutting it anymore. I am due to have surgery this year with an endo specialist. If a dr tells you to get pregnant as that helps, do not listen to them. For some women, pregnancy makes endo worse.

Can I suggest some groups?
https://www.facebook.com/groups/2285NancysNookEndoEd/about/ - they have a list of specialists
https://www.reddit.com/r/Endo/ - map of specialists

Reddit - Dive into anything

www.reddit.com

Yes I am in the UK and to get referrals has been ridiculous... I’ve pushed and pushed for further investigation and only now I am having scans etc. Thank you for the info and groups I will def give them a read.

Did you have any surgery at all?

I think I will ask GP for Gyno referral and an MRI x

 

[Pussy Galore]

Ask to be referred to a BSGE specialist. You can find your local one on their website.
They are trained specialists and by far better than regular gynecologists as they are trained in Endometriosis.

 

[bubbletea123]

Oh bless you, it’s just awful isn’t it?! Me too, couldn’t have explained it better myself and contraceptive pills come with their own side effects which aren’t great


Thanks so much for sharing, I too had CIN 3 about 10 years ago and had biopsy removal. I hope all comes back ok for your recent one. I will push, as I need answers and some sort of validation because right now I feel like a time waster and that no medical professional believes me


Yes I am in the UK and to get referrals has been ridiculous... I’ve pushed and pushed for further investigation and only now I am having scans etc. Thank you for the info and groups I will def give them a read.

Did you have any surgery at all?

I think I will ask GP for Gyno referral and an MRI x

I am having surgery this year with an endometriosis specialist that specialises in the excision surgery. Fingers crossed it helps.

 

[WatchingandJudging]

I am having surgery this year with an endometriosis specialist that specialises in the excision surgery. Fingers crossed it helps.

Good luck, I hope it does too!

 

[Loving the gossip]

I had the same for years with no help from the doctor. Then finally I had a cyst removed on my ovary. It was after the operation they told me I had endometriosis. To be honest even with be diagnosed there wasn’t much that was done and I suffered so badly every month. If I new sooner I would of froze my eggs as I tried for a baby for over a year and finally they said it won’t happen naturally so I done ivf. They only thing I will say if you are trying to get pregnant ask them to run some tests to check hormone levels because if I never done that I wouldn’t of found out I was only realizing one egg if that a month. Good luck and try and get a good doctor who’s happy to help with everything.

 

[Zenchick101]

Hello all,

I wondered if anyone has experienced the same/ similar to me and whether anything has helped.

In a nutshell, I have always suffered with horrendously painful periods every month and the contraceptive pill helped slightly. I came off it about 3 years ago due to other side effects but suffer still with my periods. Going back on the pill isn’t an option as it affected my moods and we are TTC

My symptoms are:
Hormonal acne around chin and jaw
Swollen stomach area
Bloating
Swollen feet often
Heavy periods
Pain causing me to feel faint, sweat, vomit and scream in agony!
Upset stomach at time of the month
Cramps which feel like I’m being sliced open or stabbed!
Periods last 2 days but pain is intense and it’s affecting my work- I’m off sick every month without fail

I’ve been pushing for further tests, my bloods were taken on day 21(or as close as I could get to) all came back ok, I’ve had a pelvic internal scan which showed ovulation but struggled to find my left ovary?!

No signs of cysts or masses from initial feedback from scan but I was told the internal scan doesn’t show endometrial tissue or polyps- is this true and what next?

I don’t think I can keep up with this monthly pain it is causing so much distress!! I’m on mefanamic acid and trans something, neither are helpful.

Has anyone had anything similar? Has anything helped and what should I do? Xx

I basically had tests done this fall and turns out it was endometriosis! the only thing that helped me with the pain is a really hot bath or shower pressure constantly in that area

I'm in france and my doctor had me do too types of pelvic scans - one with a gel and one in an MRI machine I believe they didnt find anything at first and its only in the last test that they saw the start of endometriosis. ask to be referred to a specialist

 

[Twinkle485]

I have horrendous period pains one of my ovaries always feels like it’s going to pop when I come on. I honestly can literally feel my ovary swelling.
It was so bad last time it gave me diarrhoea.
I’ve put on so much weight I was a 6 I’m now a 14 and they are so irregular at the minute
I also bleed heavy like fill pads in an hour I think I went through about 10 packs last time.
I can’t even do the deed a week before or after because it feels like someone’s stabbed me down there and I start bleeding again
I refuse to go doctors if I’m honest I just Can’t see them believing me.

 

[Zenchick101]

I have horrendous period pains one of my ovaries always feels like it’s going to pop when I come on. I honestly can literally feel my ovary swelling.
It was so bad last time it gave me diarrhoea.
I’ve put on so much weight I was a 6 I’m now a 14 and they are so irregular at the minute
I also bleed heavy like fill pads in an hour I think I went through about 10 packs last time.
I can’t even do the deed a week before or after because it feels like someone’s stabbed me down there and I start bleeding again
I refuse to go doctors if I’m honest I just Can’t see them believing me.

they will please get checked!

 

[WatchingandJudging]

I have horrendous period pains one of my ovaries always feels like it’s going to pop when I come on. I honestly can literally feel my ovary swelling.
It was so bad last time it gave me diarrhoea.
I’ve put on so much weight I was a 6 I’m now a 14 and they are so irregular at the minute
I also bleed heavy like fill pads in an hour I think I went through about 10 packs last time.
I can’t even do the deed a week before or after because it feels like someone’s stabbed me down there and I start bleeding again
I refuse to go doctors if I’m honest I just Can’t see them believing me.

I was third time lucky with my GP, don’t give up and keep pushing!

I basically had tests done this fall and turns out it was endometriosis! the only thing that helped me with the pain is a really hot bath or shower pressure constantly in that area

I'm in france and my doctor had me do too types of pelvic scans - one with a gel and one in an MRI machine I believe they didnt find anything at first and its only in the last test that they saw the start of endometriosis. ask to be referred to a specialist

I will thank you

 

[whatamess123]

Hello all,

I wondered if anyone has experienced the same/ similar to me and whether anything has helped.

In a nutshell, I have always suffered with horrendously painful periods every month and the contraceptive pill helped slightly. I came off it about 3 years ago due to other side effects but suffer still with my periods. Going back on the pill isn’t an option as it affected my moods and we are TTC

My symptoms are:
Hormonal acne around chin and jaw
Swollen stomach area
Bloating
Swollen feet often
Heavy periods
Pain causing me to feel faint, sweat, vomit and scream in agony!
Upset stomach at time of the month
Cramps which feel like I’m being sliced open or stabbed!
Periods last 2 days but pain is intense and it’s affecting my work- I’m off sick every month without fail

I’ve been pushing for further tests, my bloods were taken on day 21(or as close as I could get to) all came back ok, I’ve had a pelvic internal scan which showed ovulation but struggled to find my left ovary?!

No signs of cysts or masses from initial feedback from scan but I was told the internal scan doesn’t show endometrial tissue or polyps- is this true and what next?

I don’t think I can keep up with this monthly pain it is causing so much distress!! I’m on mefanamic acid and trans something, neither are helpful.

Has anyone had anything similar? Has anything helped and what should I do? Xx

Has any dr you`ve seen mentioned a laparoscopy? I went back and forth to my gp`s for years with chronic periods/pain etc.Infact i never actually had a period per se ,i`d bleed continuously for at least 2/1/2 weeks ,then maybe have a break.It felt like my insides were being sucked out everytime.
Eventually i saw a locum in our surgery.He did a pelvic exam ,took swabs etc ,and said he`d be amazed if it didn`t turn out to be endometriosis or fibroids.He arranged for a laparoscopy ,cystoscopy and hysteroscopy.Two weeks later i was in hospital ,and they discovered i had fibroids embedded all around my womb.I was advised to have a hysterectomy ,which i did 4 months later.
I understand you`re ttc ,so my heart goes out to you.I had my children ,(had a late miscarriage ,caused by the fibroids attacking the foetus) ,so it wasn`t an issue for me.Plus i couldn`t carry on as i was ,getting weaker ,more depressed ,and being told by most drs isaw ,that "I ought to be used to heavy periods at my age ,and after pregnancies"!! I was 31!! I hope your hubby will support you and that you can manage to see someone decent in your own surgery.They can find endo/fibroids with a laparoscopy ,and it`s a day surgery.Good luck ,and i hope the new year proves to be a happier healthier one for you.Xx

 

[Kbird]

This was me for literally years. Off work every month, I couldn't leave my bed let alone go to work. Doctors were no help all the tablets they tried me on made me horrendously nauseous.
I'm surprised i've not been sacked tbh. As even the week after i'd be exausted through anemia caused through the heavy blood loss.
One weekend in complete agony I saw an out of hours dr who saw the state I was in and to cut a long story short I eneded up having an endometrial ablation. Although still painful the blood loss is nw what I think a normal period should be.and the stabbing pain is less. I am able to work through it though I still struggle a bit with the pain.
The only problem is you must be done with having children as it's dangerous to concieve after having it.
Honestly I wish men knew the way so many of us suffer each month. Though I have to say my husband has always been so sympathetic.

 

[Ilando]

My male GP was useless with similar symptoms. I had a ultrasound which showed nothing.

I kept pushing it as I wasn’t happy with keep being told it was nothing. Ended up having surgery and they found endometriosis. I had it burnt off and sadly it has come back 3 times so I’ve had to have the same surgery 3 times.

I’m now symptom free. I can’t be sure that it won’t come back but it’s a relief to finally have a diagnosis and not be thought of as a fraud

 

[Zenchick101]

My male GP was useless with similar symptoms. I had a ultrasound which showed nothing.

I kept pushing it as I wasn’t happy with keep being told it was nothing. Ended up having surgery and they found endometriosis. I had it burnt off and sadly it has come back 3 times so I’ve had to have the same surgery 3 times.

I’m now symptom free. I can’t be sure that it won’t come back but it’s a relief to finally have a diagnosis and not be thought of as a fraud

always keep pushing my first test also didnt show anything!

 

[WatchingandJudging]

Has any dr you`ve seen mentioned a laparoscopy? I went back and forth to my gp`s for years with chronic periods/pain etc.Infact i never actually had a period per se ,i`d bleed continuously for at least 2/1/2 weeks ,then maybe have a break.It felt like my insides were being sucked out everytime.
Eventually i saw a locum in our surgery.He did a pelvic exam ,took swabs etc ,and said he`d be amazed if it didn`t turn out to be endometriosis or fibroids.He arranged for a laparoscopy ,cystoscopy and hysteroscopy.Two weeks later i was in hospital ,and they discovered i had fibroids embedded all around my womb.I was advised to have a hysterectomy ,which i did 4 months later.
I understand you`re ttc ,so my heart goes out to you.I had my children ,(had a late miscarriage ,caused by the fibroids attacking the foetus) ,so it wasn`t an issue for me.Plus i couldn`t carry on as i was ,getting weaker ,more depressed ,and being told by most drs isaw ,that "I ought to be used to heavy periods at my age ,and after pregnancies"!! I was 31!! I hope your hubby will support you and that you can manage to see someone decent in your own surgery.They can find endo/fibroids with a laparoscopy ,and it`s a day surgery.Good luck ,and i hope the new year proves to be a happier healthier one for you.Xx

No he hasn’t mentioned yet but I am due a follow up this week on Friday so I will certainly press for consideration of one.. although that scares me as we do want to conceive and I understand it can completely reduce changes of conceiving or stop it completely.

I can’t believe all you’ve gone through, it’s reassuring to read others stories because then I don’t feel so alone.. friends don’t understand and as supportive as my partner is he can never truly understand. Xx

It’s so interesting to hear each of your stories and how first investigations didn’t show anything- we all know our bodies and what’s ‘normal’!!! I am sorry so many of us have or are suffering