Endometriosis & Adenomyosis discussion thread

[IndominusRex]

@PollyPerks On a day to day basis the adeno diagnosis doesn’t make much difference. Treatment is slightly different including ablation. How did you find zolodex?

@Keylimepie99 if they’re telling you to just take pain have they given you mefenamic/tranexamic acid? If not ask for them. Have you had your MRI results? A good consultant will be able to spot endo from an MRI but not all do.

 

[PollyPerks]

@PollyPerks On a day to day basis the adeno diagnosis doesn’t make much difference. Treatment is slightly different including ablation. How did you find zolodex?

That's helpful to know, thanks! As for Zoladex, I remember feeling quite tired a lot of the time and having more headaches than usual. I got hot flushes a fair bit and so I also took HRT while I was on it. It was great to be free of periods for six months though! Especially as before my diagnosis my periods were incredibly irregular, heavy and painful. I was offered a second round of Zoladex a few years later in 2004 or so, but I decided to just stay on the pill and started taking that back to back instead, so I'd go two to three months without a bleed. That's what I've been doing ever since.

 

[Choppy83]

Hi ladies I have just discovered this thread and am after some advice, I've always thought I had endo, horrendous periods bad cramping, fainting etc, I've had scans but no scopes so no actual diagnosis but was wondering, is endo usually bad around the week of ovulation? And also has any found the Marena coil helpful? Thank you!

 

[Keylimepie99]

@PollyPerks On a day to day basis the adeno diagnosis doesn’t make much difference. Treatment is slightly different including ablation. How did you find zolodex?

@Keylimepie99 if they’re telling you to just take pain have they given you mefenamic/tranexamic acid? If not ask for them. Have you had your MRI results? A good consultant will be able to spot endo from an MRI but not all do.

Theyy have given me ponstan, but that was my own GP! Consultant telling me to take neurofen/paracetemol! Should have results back today, 48 hrs I was told!!

 

[soymilk]

Hi ladies I have just discovered this thread and am after some advice, I've always thought I had endo, horrendous periods bad cramping, fainting etc, I've had scans but no scopes so no actual diagnosis but was wondering, is endo usually bad around the week of ovulation? And also has any found the Marena coil helpful? Thank you!

Hi! I find that the pains I have around my ovulation week are sometimes just as bad as my period pains, really bad bloating and cramps, sharp shooting like pains but I also sometimes have pain at the end of my cycle too! I don't know anything about the Marena coil though sorry - I'm currently taking Sibilla which is a hormonal pill used to treat endo and pelvic pain.

Theyy have given me ponstan, but that was my own GP! Consultant telling me to take neurofen/paracetemol! Should have results back today, 48 hrs I was told!!

I used to swear by mefenamic acid - I'd ask for that if you can!

 

[Vee6]

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

I went private for mine in the end. I wasn’t taken seriously by any gps. Private lap and dye showed endo and was cleared out at the same time.

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.

@PollyPerks On a day to day basis the adeno diagnosis doesn’t make much difference. Treatment is slightly different including ablation. How did you find zolodex?

@Keylimepie99 if they’re telling you to just take pain have they given you mefenamic/tranexamic acid? If not ask for them. Have you had your MRI results? A good consultant will be able to spot endo from an MRI but not all do.
[/QUOTE
I had zolodex years ago. Calmed things down endo wise but the hot flushes were something else!!
I’m really wanting to take something to stop my periods now. But when I tried the pill a couple of years ago I gained weight and was so moody - sod that!

 

[Thatscool]

Hi guys, I've been reading this thread for a while now and finding it so useful, im sorry you are struggling too but it's helping me realise I'm not on my own with feeling this way (the hospital would make you feel that way though).

Can I please ask what others do when the pressure/pain from front of pelvis to bum is too bad to go to the toilet? I am in agony and bursting to go but the stabbing pains are so bad I can't get my body to release and actually go . I can barely sit, stand or walk with the pain right now. If anyone has advice I will be forever grateful .

 

[Inforapenny]

Hi guys, I've been reading this thread for a while now and finding it so useful, im sorry you are struggling too but it's helping me realise I'm not on my own with feeling this way (the hospital would make you feel that way though).

Can I please ask what others do when the pressure/pain from front of pelvis to bum is too bad to go to the toilet? I am in agony and bursting to go but the stabbing pains are so bad I can't get my body to release and actually go . I can barely sit, stand or walk with the pain right now. If anyone has advice I will be forever grateful .

Have you been given pain meds? I've got a whole box of different types of meds like morphine. It does help x

 

[Bgr101]

Hi after reading here you all seem to have it much worse than me but i was wondering if anyone could describe the pelvic pain you get from endometriosis? I find it feels like my insides are being pulled down my lower back if that makes sense, i also get pain into my left hip. I havent been diagnosed as yet but i have always had heavy periods since being a teenager. I also have vulvodynia and vaginismus if anyone also has these. I would love just to try and get my pain under control. Would an MRI be advisable?

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!!

What symptoms had you been having?

 

[Ilando]

Hi after reading here you all seem to have it much worse than me but i was wondering if anyone could describe the pelvic pain you get from endometriosis? I find it feels like my insides are being pulled down my lower back if that makes sense, i also get pain into my left hip. I havent been diagnosed as yet but i have always had heavy periods since being a teenager. I also have vulvodynia and vaginismus if anyone also has these. I would love just to try and get my pain under control. Would an MRI be advisable?


What symptoms had you been having?

My endometriosis causes pain in my left hip which feels like the bone is going to snap in half. I was misdiagnosed with vaginismus but it was actually just pain caused by the endometriosis. Various surgeries have helped and enabled me to get pregnant

 

[IndominusRex]

@Bgr101 Definitely sounds like it could be! Have you seen a specialist at all?

@Thatscool I’m having the same issue at the moment. Know I have bowel adhesions as they showed up on MRI. I’ve been relying on laxatives when it gets really bad.

 

[Pacho]

Does anyone know of a link between endometriosis & mouth ulcers ? I am interested to know if any of you suffer with mouth ulcers on & off throughout the year & if it is a symptom of our endometriosis.

 

[Inforapenny]

Does anyone know of a link between endometriosis & mouth ulcers ? I am interested to know if any of you suffer with mouth ulcers on & off throughout the year & if it is a symptom of our endometriosis.

I don't know but I'd guess that if your body is fighting inflammation and run down you will unfortunately be prone to mouth ulcers.
Endometriosis exhausts the body so I would surprised if there wasn't a link.
The problem is there isn't that much research out there.

 

[Pacho]

I don't know but I'd guess that if your body is fighting inflammation and run down you will unfortunately be prone to mouth ulcers.
Endometriosis exhausts the body so I would surprised if there wasn't a link.
The problem is there isn't that much research out there.

Yea, there is no information on it. My niece gets them too & she also has endo. Hers are exactly like mine. As you said I'd imagine it is caused by the inflammation. I was just curious how many of us have this as a mini survey lol

 

[Readread]

Had my laparoscopy two weeks ago, can someone pleeeeease tell me when this swelling will go down?!

 

[Pacho]

Had my laparoscopy two weeks ago, can someone pleeeeease tell me when this swelling will go down?!

My swelling went down after about 2 weeks but it took about a month for my tummy to feel completely ok if that makes sense ? Even though after 2 weeks I didn't look swollen I still felt it. I didn't swell massively though. I thought after the surgery it would be like endo belly but it wasn't as bad or swollen as when I got my period pre lap

 

[JoeBloggs]

I’ve probably mentioned this before but my mind is spiralling. I’m booked for a hormonal coil next Friday, I was all set to cancel it but I cannot shift this dull ache and sharp pain in my womb area. Seems it may be endo pain (I’m extra lucky and don’t get many symptoms).

After looking it up, a hormonal coil can be used to help. I’ve had one before but I have another 18 months left on my Copper one so I was just going to sit it out but the dull ache is pretty constant.

I know everybody is different so reading online just complicated things. My husband has no idea and my girlfriends don’t have coils or endo.

 

[Readread]

I’ve probably mentioned this before but my mind is spiralling. I’m booked for a hormonal coil next Friday, I was all set to cancel it but I cannot shift this dull ache and sharp pain in my womb area. Seems it may be endo pain (I’m extra lucky and don’t get many symptoms).

After looking it up, a hormonal coil can be used to help. I’ve had one before but I have another 18 months left on my Copper one so I was just going to sit it out but the dull ache is pretty constant.

I know everybody is different so reading online just complicated things. My husband has no idea and my girlfriends don’t have coils or endo.

Mirena can help reduce symptoms of endometriosis. The copper coil did nothing but make my symptoms worse. I was due to have the Mirena fitted but they suspect I have PID so am on a course of antibiotics to clear it before I can try the Mirena. So I can’t speak for definite but I know a few people that have mirena and endometriosis and have nothing bad to say about it.

 

[just_stir_it_una]

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

 

[openbook1]

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

Hey
I think everyone with endo can relate to how you are feeling. I am glad you are seeing an Endo team. Given the chances that you have symptoms and they are willing to do a lap, there is a high chance it IS Endo. Be glad that you are seeing specialists, they are trained to see Endo that many regular gynecologists will miss. I had a lap and excision with an Endo specialist last year and had the same worries but there was Endo and since then I have had no pain. I am still on the Depo shot though to suppress regrowth.
Quick question, when they do the lap if they find Endo are they going to remove it then? If so, will it be excision removal? Most specialists do excision but I know some people who have had an ablation and it left them in more pain. It also is common for specialists to want to do the lap and excision at the same surgery so they are not operating on you twice.
Now, there is a small chance that it isn't endo but perhaps they would see something else going on. xxx