Long awaited and almost deffinate that I have endometriosis as I have many of the classic symptoms:
Painful periods where I can't even walk
Back pain (throbbing lower back before period)
Painful sex
Sharp stabbing pains in my rectum every time I am on my period
Groin pain that radiates down to my legs
Blood in my urine when I'm on my period and a really painful bladder near enough all the time
Really bad pms and anxiety
A retroverted uterus (classic sign of endometriosis in the POD)
The list goes on and on and on...
All my close friends and work friends know I'm going in for it and everyone is saying "let us know how you get on"....
Well.. If it's bad news and I do get diagnosed with it... I just don't know what to tell people?
"I've been diagnosed with endometriosis"... It's not an easy thing to tell people really is it because most people associate it with infertility etc and I think it would just be arkward for everyone to know and for everyone to be assuming I might struggle to get pregnant or that I might be now 'trying to get pregnant' because I have endometriosis...
I wanted to keep the lap private but seems as its Christmas and I won't be out boozing with work or my friends I had to tell them I was going for an operation so wouldn't be able to make the numerous meals and nights out planned.. I'm only 22 so to NOT be out at Christmas it's almost impossible to think of excuses!!
Has anyone any advice of what I should tell people if I do happen to be diagnosed!?
Also, any aftercare advice would be much appreciated... So nervous!!!
My partner of over 5 years is coming with me on Monday so I feel I have loads of support on the actual day... Just a really scary time and just feeling like I'm in a whirlwind with it all...
Endo affects such personal parts of a woman's life. It's understandable that you're wondering how or if you might want to discuss that with others. It's also understandably difficult to deal with how endo and its treatment affect your schedule, particularly around the holidays.
This is about your health and comfort. I think in any journey with endo it's helpful to have a self-protective and nurturing mindset, to be honest about what your situation means to you, and to release yourself from pressure of other people's expectations. You aren't beholden to tell anyone your diagnosis. Your fertility is your business.
When I had an emergency oophorectomy when I was 14 I was quite private about it. Everyone knew I had surgery because they came to visit me, but if they asked more I would just shrug and say it was abdominal surgery.
If you do tell people, you have nothing to be ashamed of. As long as it's your choice.
That said, in my experience, I've come to take a long term view. The surgery and recovery will pass, what counts is the outcome. The best outcomes come from the top surgeons, particularly with excision. I was rushed into surgery to fit it into vacation time, and I ended up getting poor results. There are excellent patient resources out there that are really worth a look prior to surgery.
As far as recovery goes- be cautious of constipating foods. Prepare the softest surface you can- I commandeered every pillow and blanket in the house and slept like the princess and the pea!
Hey, don't worry about other people right now, it's all about you! If you do get diagnosed just tell the truth - it isn't a death sentence. You aren't obliged to tell everyone, just who you're comfortable with, if endo becomes an issue for you in future it can be good to have a support network around you when you're suffering pain etc. There are 4 stages of endo mild - severe. It affects everyone in different ways so fertility isn't always an issue - I have stage 4 but it tends to gather around my bowel, bladder and ligaments with only flimsy adhesions on my ovaries. So even after 4 surgeries and a multitude of doctors telling me we'd have problems we got pregnant almost straight away! That's after 6 years of worry about ivf etc., I was diagnosed at a similar age to yourself.
It's ideal to have an an endo specialist carry out excision surgery rather than laser for endometriosis. So ask your doc about their background and the type of surgery they're going to do. As this is a diagnostic lap they have probably not booked you for a long period in theatre - they give you your anaesthetic, make a few small incisions, up to 4 in a diamond shape around your navel and your tummy is pumped with gas to inflate it - allows them to have a good look around. If you have no disease they'll do nothing, minor - they'll prob try and deal with it, stage 3-4 it's usually too much to do in the time so they close you back up and book you for another surgery in 3-4 months time. Be prepared for this happening, but don't worry as if they don't really do anything you generally recover pretty quick.
When you wake up after, you'll feel really sore - nurse will give you iv morphine or something like that. So the owww feeling is incredibly short lived and you don't remember it. You'll be on the ward in no time after this and just on regular pain meds, groggy and stiff but mostly sleepy - get cosy bed socks and a lovely big fluffy dressing gown to snuggle in, you'll really appreciate them! Get some peppermint tea for after the surgery, or peppermint sweets. It helps settle your digestive system and the gas dissipating after. This can be a bit uncomfortable, but you're fine in a few days. They will have you up and moving within 24 hours. You might be a bit constipated due to the pain meds, and your bladder might be a bit temperamental after but all this sorts itself out in a day or two. If this happens it can be unnerving but trust me it will all work out fine.
Here's a great link that breaks it all down step by step.
I know it's pants not being able to go out and party at xmas, there will be other times. Enjoy the chrimbo telly, chocolate and resting up in new pjs.
Good luck & Happy Christmas xx
Hi. I've just said 'removal of a cyst' as an explanation for business associates - enough of an explanation for people to know you're going to be out of action for a bit , but not something anybody is particularly interested in to discuss more.... A bit of a white lie but saves a lot of embarrassment
Obviously people close to me I've told the real reason.
Good luck - hope they sort you. I had my diagnostic lap in oct and an op to remove the endo 3 weeks later. Hopefully will be feeling the benefits soon.
I am suffering the same symptoms as yourself namely:
Sharp pain in rectum when I am on my period.
Heavy and extremely painful period, including a lot of clotting.
Pain during sex.
I was told at my ultrasound that I have a tilted womb!?
I also have awful anxiety and PMS.
I am worried as to what is going to happen now. I had my ultrasound and as of yet have not been told anything. I don't really know what the process is and the doctors aren't all that helpful.
Can you possibly give me a rough timeline of events before the lap. As this is something I am extremely nervous about.
I am 21 and have been with my partner 5 years too. Although I have been dealing with this since my periods started, I am so worried that I will be dealing with this forever, especially with the whole pregnancy issue!
Thanks for your comment!! All of these comments are so great it's lovely to have support!!!
Your symptoms are very similar to mine!!
My timeline of events:
- paid for private gyne appointment with Dr who deals with Endometriosis (I had searched online all my symptoms and instantly knew it was endometriosis) this was two years ago!!
- had a ultrasound
- got told all was clear and that due to my age that it is more than likely painful periods (baring in mind the symptoms were not half as bad as they are now)
Continued on the pill for two years... Decided to come off the pill to try another form of contraception.. The month after I had a "real" natural period.... And oh my god!!! Intense pain, throbbing legs and back blood clots migraines the lot I was in a mess!!
- marched straight back to the private hospital to see the exact same doctor I saw last time
- had a physical exam and he confirmed my uterus had now changed to retroverted (which it was two years previously)
- he immediately put me on the urgent list on the NHS as he worked on the NHS hospital as well and the lap would have been a lot of money private
- I rang the booking line from the moment I was referred for a lap which was in July this year.. I rang the line everyday pestering and askin the timescales ect...
- finally got a cancellation a month ago with my dr for the lap...
Going in on Monday - feel so anxious and nervous but whatever the outcome - I will survive and even though I might not like it... I am sure I will find the strength to get through it like the other thousands of women who are diagnosed...
I wish you all the best with your investigations.. Just be pushy!! If I had been pushy two years ago it could have not progressed (it deffo feels as though it has)..
I agree with everyone else that how much you tell people is up to you. You can be vague and if people ask prying questions about pregnancy or whatever, you can always politely say you'd rather not discuss that right now.
I tell people freely that I have endometriosis (if it comes up) and my experience is that the majority of people's reaction is that they don't really know what it is, and then I can explain however much I want to about it. (Maybe this is different in the UK if there's more awareness than where I live in the northern US?) I think everyone has the right to view it as personal, but I've never felt more private about it than I would about any other health problem. And if someone doesn't think I should be talking about uterine tissue, that's their misogynistic problem.
Had my operation today.. Was given the all clear...
No endo anywhere!!! Showed me the pictures taken and everything looks healthy!!!
I'm completed baffled and so upset that I have no answers!!!
I had a follow up appointment with my gyne in 3 months time - I will mention an MRI scan for adenomyosis... It's the last resort and possible cause of all of my horrible symptoms...
Feelin pretty sore and drained after today - can't wait to be up and about again!
Thanks, just woken up feeling lots of pain this morning so hopefully the cocodamol will sort that out!!
I will have a follow up appointment in 3 months time where I will be given the opportunity to discuss the operation and what further investigations can be done...
I feel really confused as all my symptoms point to endometriosis!! I hope the surgeon hasn't just missed the endometriosis as he was just a general gyne not a specialist..
However, saying that he said if I had mild/moderate endo - he deffo would of been able to see it..
So for now all seems good but it's feels to good to be true...
It must be awful not having answers and after everything that you have been through.
My mum has endo, she is in her 50's now and when she was in her 20's she had 4 laps, the first 3 no endo was found, it was only on the 4th lap that they found the endo.
So surgeons can miss it. You know your body best, if your pain and symptoms continue then keep pushing your doctors.
Hope your pain relief is helping with the pain.
After my lap I was in agony, those little piddly incisions hurt! And it was my first ever surgery.. so when you haven't experienced being cut it is going to be a shock to the system!
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Can lap trigger worsening endometriosis? Or can recovery take longer than 3 months?
