Endometriosis & Adenomyosis discussion thread

[Calmyourtitsdown]

Push push push. My old gp when I was first diagnosed got the hump with me because I refused zoladex he told me "you can't come in here & keep asking for diathermy " wishing you luck & strength
[/QUOTE]

@Magpierainbow
Thank you, I will go back to the GP once I’ve got over my pneumonia/chest infection. My head’s spinning with it all at the moment. Unfortunately, my GP has always been one of those ‘if you don’t act bothered, I’m not gonna act bothered’.
And I’ve never been one to make a fuss, I always feel guilty approaching the doctors. Especially the past two years. But why should I be left like this? Why should I accept this as ok?!

 

[Magpierainbow]

Push push push. My old gp when I was first diagnosed got the hump with me because I refused zoladex he told me "you can't come in here & keep asking for diathermy " wishing you luck & strength

@Magpierainbow
Thank you, I will go back to the GP once I’ve got over my pneumonia/chest infection. My head’s spinning with it all at the moment. Unfortunately, my GP has always been one of those ‘if you don’t act bothered, I’m not gonna act bothered’.
And I’ve never been one to make a fuss, I always feel guilty approaching the doctors. Especially the past two years. But why should I be left like this? Why should I accept this as ok?!
[/QUOTE]
How are you feeling now? X

 

[justheretoread99]

Hi all,

Do any of you with Endo suffer with your teeth/gums?

(Not been diagnosed with Endo, waiting for results of a scan and then a laparoscopy)

Since as long as I can remember I’ve suffered with inflamed and bleeding gums. I brush twice a day with a good electric toothbrush, floss, follow all advice from my dentist but nothing seems to change. Id hate the fact my dentist probably feels I don’t look after my teeth properly.

I’ve read that having Endo can affect gum health and more likely to have gum disease (& hormone levels can too, especially pregnancy) but I can’t find much info on it all. Would love to hear if anyone is similar.

 

[Pennypennypenny]

Hi all,

Do any of you with Endo suffer with your teeth/gums?

(Not been diagnosed with Endo, waiting for results of a scan and then a laparoscopy)

Since as long as I can remember I’ve suffered with inflamed and bleeding gums. I brush twice a day with a good electric toothbrush, floss, follow all advice from my dentist but nothing seems to change. Id hate the fact my dentist probably feels I don’t look after my teeth properly.

I’ve read that having Endo can affect gum health and more likely to have gum disease (& hormone levels can too, especially pregnancy) but I can’t find much info on it all. Would love to hear if anyone is similar.

I did not know this. after years and years and years of hell was diagnosed with endo back in 2000. Long story short I am now under a gum specialist

 

[loubylou50]

Hi all,

Do any of you with Endo suffer with your teeth/gums?

(Not been diagnosed with Endo, waiting for results of a scan and then a laparoscopy)

Since as long as I can remember I’ve suffered with inflamed and bleeding gums. I brush twice a day with a good electric toothbrush, floss, follow all advice from my dentist but nothing seems to change. Id hate the fact my dentist probably feels I don’t look after my teeth properly.

I’ve read that having Endo can affect gum health and more likely to have gum disease (& hormone levels can too, especially pregnancy) but I can’t find much info on it all. Would love to hear if anyone is similar.

This is so interesting to read, I had heard of it being in the nose and causing nose bleeds, but not thought of the mouth! I have endo, and now I think about it, for months I’ve had just one area of gum that bleeds randomly most days - it can even start just while I’m talking! So embarrassing I’ve been to the dentist several times and all ok, it’s not inflamed or sore - it just bleeds in this one place!

 

[justheretoread99]

I did not know this. after years and years and years of hell was diagnosed with endo back in 2000. Long story short I am now under a gum specialist

It literally is years and years isn’t it
I hope the specialist can help with the gums. I get so embarrassed going to the dentist.

This is so interesting to read, I had heard of it being in the nose and causing nose bleeds, but not thought of the mouth! I have endo, and now I think about it, for months I’ve had just one area of gum that bleeds randomly most days - it can even start just while I’m talking! So embarrassing I’ve been to the dentist several times and all ok, it’s not inflamed or sore - it just bleeds in this one place!

Ooh and I’d never heard of it being in the nose!
I’m the same I have certain areas of gums constantly bleeding when I brush/eat.

I wish there was more research into Endo and other female/hormone related issues.

 

[Magpierainbow]

had heard of it being in the nose and causing nose bleeds,

That's really interesting I have found that happening to me cyclicly (hope that's right word) I found articles about it but haven't been to gp to be referred or anything as am now on verge of menopause so am hoping to get to other side with pain management
Hoping everyone doing ok as poss x

 

[Calmyourtitsdown]

@Magpierainbow
Thank you, I will go back to the GP once I’ve got over my pneumonia/chest infection. My head’s spinning with it all at the moment. Unfortunately, my GP has always been one of those ‘if you don’t act bothered, I’m not gonna act bothered’.
And I’ve never been one to make a fuss, I always feel guilty approaching the doctors. Especially the past two years. But why should I be left like this? Why should I accept this as ok?!

How are you feeling now? X
[/QUOTE]

Hi Sorry for late reply! Thank you for asking, I’m now on the mend from my chest infection. So much so, I rang the doctors the other day, and spoke to a different GP about my diagnosis.
He told me, that standard procedure is for the surgery to attempt to help me, before a referral can be made to gynae? Is that standard, or does it depend on what area/part of the country you’re in?! He talked to me about three different pathways, with the pill. And sent me a link with the details. I’m undecided at the moment, as to which pill to try. But at least this doctor seemed more willing to help. My ‘lump’ has grown, and is causing me a lot of pain. I have also noticed in recent months that I am very bloated around the middle. Has anyone else experienced this? I’ve never really been bothered my middle, even post caesarean, but it’s actually getting me down. I doubt very much going on a pill, will help with that

 

[Magpierainbow]

How are you feeling now? X

Hi Sorry for late reply! Thank you for asking, I’m now on the mend from my chest infection. So much so, I rang the doctors the other day, and spoke to a different GP about my diagnosis.
He told me, that standard procedure is for the surgery to attempt to help me, before a referral can be made to gynae? Is that standard, or does it depend on what area/part of the country you’re in?! He talked to me about three different pathways, with the pill. And sent me a link with the details. I’m undecided at the moment, as to which pill to try. But at least this doctor seemed more willing to help. My ‘lump’ has grown, and is causing me a lot of pain. I have also noticed in recent months that I am very bloated around the middle. Has anyone else experienced this? I’ve never really been bothered my middle, even post caesarean, but it’s actually getting me down. I doubt very much going on a pill, will help with that
[/QUOTE]
I'm not familiar with standard procedures since pandemic started sadly but at least doc wants to work with youalso when i was going regularly it was diff in each area. if you worried ask for referral to endo specialist possibly? If bloating is up & down I would check with doc, if permanent more lumplike could well be fibroids I would write a diary of everything then ask see the helpful doc (when you feel well enough) & go through everything, don't ignore anything or feel like you shouldn't get checked out however hard it is to get to a specialist, although I know well how much energy it takes to get there. Let us know how you go? 🫂

 

[Calmyourtitsdown]

Hi all
Just looking for advice/a place to process…
So I decided on the mini-pill, and have been on it about 6 weeks now. The first four weeks were terrible, I spotted throughout and had not one, but TWO periods last month!
Since finishing the second period, there has been no more spotting Can’t say I’ve noticed much difference in pain. Worst thing for me, is this ridiculous bloating that I have, which feels to me like it’s getting worse.
I also wondered if my notoriously ‘small bladder’ may be affected by the endo? I am having to constantly pee, feeling a real urgency, but not actually having much to give when I do go to the loo. This past week, I’ve been up on the hour, every hour to wee. If not that, I’m thinking maybe I have an over active bladder?
I feel really in the dark about it all, I don’t even know what stage endometriosis I have. And I honestly feel ‘under treated’. I’m really getting quite down about the bloating, I feel huge. I’m not a big girl, but I feel it right now. It’s horrible, and we have summer round the corner, and I don’t feel like I can wear anything. I just look awful
Sorry for the rambling, just wanting to get it out and hope someone may come along who is wiser than me!

 

[IndominusRex]

@Calmyourtitsdown bladder definitely sounds related to me. I go a similar amount and my surgeon told me it’s not normal. I don’t have Endo on my bladder itself but the swelling of everything else puts extra pressure on it.
And I feel exactly the same re bloating!! Hate it so much.

 

[Ljb1984]

Hi all I am due to have my first laparoscopy in a few weeks after years of ttc with no joy and a rubbish doctor who dismissed my unusual cycles etc. I finally managed to go private which is good news. Can anyone help me with advice of what to take what I may need and a rough recovery time as I assumed I would be up and about real quick but research shows no. Tia x

 

[Pennypennypenny]

Weirdly I was watching an old episode of casualty which was aired yesterday. In it one of the characters had just been diagnosed with endometriosis. She was told of some options and one of them was a hysterectomy after which she would be put on HRT as the op would trigger immediate menopause. It was explained to her that unfortunately endometriosis responds to estrogen and that it would grow back again. This is exactly what happened to me, now I see why they no longer recommend hysterectomies

 

[IndominusRex]

Hi all I am due to have my first laparoscopy in a few weeks after years of ttc with no joy and a rubbish doctor who dismissed my unusual cycles etc. I finally managed to go private which is good news. Can anyone help me with advice of what to take what I may need and a rough recovery time as I assumed I would be up and about real quick but research shows no. Tia x

If it’s a diagnostic lap (which is what isn’t sounds like) then you’ll want 1-2 weeks off work to recover but you’ll be on your feet (albeit slowly) the same/next day. If you’re having excision surgery then up to 6 weeks.

 

[Ljb1984]

If it’s a diagnostic lap (which is what isn’t sounds like) then you’ll want 1-2 weeks off work to recover but you’ll be on your feet (albeit slowly) the same/next day. If you’re having excision surgery then up to 6 weeks.

Thank you so much. I am not 100% sure what they are doing but I have my pre op next week so I can find out more then. Thank you though x

 

[Elisha97]

I finally have my first laparoscopy booked but I’m terrified they won’t find anything and it will be a waste of time

 

[xcupcakex]

I finally have my first laparoscopy booked but I’m terrified they won’t find anything and it will be a waste of time

I felt exactly the same and completely understand! All I can say is you know your pain and it’s a good thing you’re getting checked out. Whether or not you have endo, it rules it out if you don’t.
I started to doubt myself and my pain, but they confirmed severe rectovaginal endo and endo in my bowel.
My MRI, transvaginal and ultrasound all came back clear prior to surgery. Good luck and I hope you get answers x

 

[justheretoread99]

Had a pelvic MRI in December 2021. Haven’t heard a thing since.

I know the NHS are under so much pressure right now, but would you all think this is normal in terms of waiting times? Or should I be contacting the gynae/her medical secretary asap?

My gynae said to me if they didn’t find anything on the MRI then next step would be laparoscopy. Been almost 2 years since my referral from GP … so fed up of the waiting. No answers, nothing.

 

[Ljb1984]

Had a pelvic MRI in December 2021. Haven’t heard a thing since.

I know the NHS are under so much pressure right now, but would you all think this is normal in terms of waiting times? Or should I be contacting the gynae/her medical secretary asap?

My gynae said to me if they didn’t find anything on the MRI then next step would be laparoscopy. Been almost 2 years since my referral from GP … so fed up of the waiting. No answers, nothing.

Bless you ! I was exactly the same I was referred from my GP last year for the initial consultation. Kept thinking they forgot me. In the end I called up the gynaecology department and the patronising call handler told me it’s 8-9 months for initial consult and then another 2 years for surgery. So I went private (Benenden health who are very reasonable) saw a consultant and was booked in within a month, hope you get some answers soon xx

 

[justheretoread99]

Bless you ! I was exactly the same I was referred from my GP last year for the initial consultation. Kept thinking they forgot me. In the end I called up the gynaecology department and the patronising call handler told me it’s 8-9 months for initial consult and then another 2 years for surgery. So I went private (Benenden health who are very reasonable) saw a consultant and was booked in within a month, hope you get some answers soon xx

As shocking and unacceptable as those waiting times are I’m glad it’s not just me experiencing them.

Thank you so much Glad you’ve been able to go private. I hope your journey smooth going forwards.

I’ll research Benenden but very much doubt I’ll have the finances xx

So tit being a woman