Recently been diagnosed with the above after having no idea I even had endometriosis.
I have pelvic pain everyday, stabbing pains in my back side, back pain, generally feel crap.
Anyone who has the same or wants to give me a virtual hug- welcome!!! X
Humongous virtual hug coming your way xxxxx
I’m still waiting for a lap but I sometimes get a sharp stabbing pain shooting up my back side. Is this something similar to what you had? Xx
Yep- awful pains up my back side. What symptoms are you having? Where are you having the lap?
I’m waiting for my second at the moment, can’t believe I’m having 2 ops in one bloody year!!! X
I have a bunch of symptoms tbh, like painful, heavy periods with lots of clots. Painful sex, bloating, lower back pain, painful bowel movements when on period and the sharp pains.
I’m waiting to see if I can be moved up the waiting list as things have gotten worse, so my doctor has written to my gynae. I think I’m having it done at hospital near me but they aren’t an endo specialist Centre. Which kinda worries me as I don’t want anything missed xx
Bless your heart, it’s an awful experience to go through as a woman. Mines hit me like a ton of bricks since coming off the pill.
I’m seeing Alfred Cutner in London, he specialises in Endo excision which has the best results long term.
How old are you if you don’t mind me asking? I’m 28 x
I’m 19 and yeah it is tough, definitely has been affected me mentally atm like random breakdowns and stuff xx
Hi Katie I'm also an endo sufferer. Have had 4 surgeries. But now because of various fertility treatment. Since last year my periods have been horrendous . Cysts off and on. So I'm also thinking of seeing Dr Cutner . Where are you seeing him ?
I’ve got a consultation with him in June- not sure which route we’re going down yet, private or NHS. Will see how the consultation goes.
Are you TTC now? I’m so desperate for a baby. I wish that was all I had to think about than this fricking endo xx
The things us women go through!!! I’m now in temporary menopause to try and calm down the endo. I appreciate all the help they’re trying to give but it doesn’t have its effect emotionally being a woman xx
I tried the temporary menopause and omg I got all the side effects like hot flushes and stuff so I came off it straight away. Yeah it’s hard, I don’t have a lot of support so this forum is amazing xx
Hi there
Yes, snap, me too! It's a pretty deadly expression, isn't it? 'Obliteration'...it sounds like someone's dropped a bomb in your insides!!! And it's such a shock to hear that you have such a horrible disease when you didn't have a clue about it before!!!
I also had no idea whatsoever that I had such a severe condition....my consultant only told me a year before after she'd given me an internal examination that I 'might have endo' and it was 'possibly' on my bowel which might account for all the pain going to the toilet, blood from rectum, etc., etc.
I went into my diagnostic lap last September (the surgery took a whole year to organise) in a state of total ignorance about the disease. To be honest, I didn't realise that as a patient you'd have to research your illness yourself and read up on female anatomy, etc. etc., I just blindly thought that I'd be in 'safe hands' and 'doctor knows best'....
When I left the hospital I received a discharge note a couple of days later stating that my POD was obliterated, my US ligaments were obliterated, my right ovary was stuck to my 'fossa' (?!!!), my left ovary was partially stuck, I had a 3.5 cm nodule in my POD and I had adenomyosis!!! What?!!! It took me about 30 minutes to look up the meaning of these terms and acronyms on the internet - how do they expect a patient to understand all the totally foreign terminology? Don't they realise how upsetting it is to use terms that we don't understand? They frighten you half to death!!! And do you know what, not a single person from the hospital contacted me afterwards to check to see that I'd understood any of it!!! To make matters worse, after a couple of weeks I received a letter from the hospital saying that my follow-up appointment would be in March - a whole 6 MONTHS after receiving such a devastating diagnosis....😩
Sorry to go on...it's just that I find the whole experience even now, very, very difficult to understand and still really shocking! And other women are still experiencing the same terrible treatment.....unbelievable!!
As a result of the discharge letter and the fact that no-one in the hospital seemed to give a damn about how I would feel afterwards, I fell into a very bad period of total despair and anxiety, made worse by the much worse pain I experienced as a result of the lap. Anyway, finally, after about 4 and a half months I did turn a corner and am in a much better place physically and emotionally now but I still don't understand why it isn't hospital policy for someone to at least phone you after you've received an awful diagnosis and check to see if you're okay and ask if you'd like some clarifications or support - it's not too much to ask and it would really help us to feel that we're not so alone and helpless!!!!
Thank goodness we've got this forum at least...it's so helpful to share experiences and realise that we're not alone - and it's a great way to receive support when you're feeling really down and feel that no-one else understands what you're going through..
So, anyway, after a longer message than I'd intended to send (sorry about that 😉!) I am certainly sending you big, big hugs!! I know exactly how you're feeling - it really is devastating news. But you will get through this horrible stage...us endo warriors are made of strong stuff!! Hang on in there!!! Wishing you all the very best of luck going forward - really do hope you get the right treatment and hope you'll feel better very soon, xx
Gosh I feel I could write this myself ha ha.
I hate the word “obliterated”, before I had my lap the gynaecologist thought I may have endo in the POD, but when I heard word obliterated after the op I was devestated and I still am.... it’s only been 13 days since op so I’m feeling very vulnerable physically and emotionally.
My POD is obliterated, top of cervix and vagina stuck together and it’s in my utero sacral ligaments. So frickin painful places lol. Trust me to get it there... I was told I had “IBS” all these years.
Are you having a second lap?
I’m so lucky I’ve got a wonderful Husband who is supporting me with regards to a second surgery and I’m going for a centre that does excision surgery
Xxx
Hi again!!
You poor thing, yes, you must still be feeling very vulnerable - I certainly was for a very long time after the lap. And yes, I totally agree, I don't think the medics appreciate what it's like having such an invasive procedure done...it does knock the stuffing out of you!!! I'm so very sorry to hear that you also had a miscarriage in January - that must have been a truly heartbreaking experience and then to be diagnosed with endo on the back of that is really, really tough to take!!
I'm so pleased your husband is so supportive. My other half is the same and yes you're dead right, we're really lucky to have them.
I'm also really pleased to hear you're going for a centre that does excision surgery - so fingers crossed they'll be able to take it all out and you won't get any recurrence. And also, fingers crossed, your fertility won't be affected. I've read many, many cases of women who've managed to conceive after they've had their endo excised...so there's lots of hope for the future 😊!!
In answer to your question, I've decided not to have any more surgery. After my lap I saw a private consultant and then a different consultant at the same hospital where I had my lap done and since then I've also seen two colo-rectal specialists and the general consensus is that I need to have a total hysterectomy and may well need to have a bowel resection because the endo is infiltrating the bowel. To be honest I'm just not ready for such a massive op - I think after having had the just a diagnostic lap last time round, such a massive amount of surgery would probably kill me 😵!!
I've asked to see my new consultant in September for a follow-up appointment and I'll also request another MRI to see whether or not the endo tissue has grown...In the meantime I'm following the endo diet religiously (!), taking supplements and trying my best to stay as healthy as possible. I do actually feel a lot better, actually, mainly because I feel I've got back some control over my life and so don't feel so upset and anxious as I did when I first received the diagnosis. Anyway...
Onwards and upwards!!!
I really do hope you make an excellent recovery from the lap - I'm sure your husband is looking after you. Take it easy if you can and try not to do too much to begin with. It took me a good 2 months before I really started feeling like I was moving around normally again.
The good news is that at least the endo has been found and with the right treatment you may be able to look forward to a pain-free future and be able to conceive. So, try and stay strong and look after yourself as much as possible. I'd really recommend the endo diet.
Sending big, big hugs your way!!! xxx
And I agree, doctors don’t appreciate the emotional impact of such a diagnosis. I had a miscarriage in January and was in pain ever since and that’s how my endometriosis got diagnosed.
Not only have I got this diagnosis to contend with, but I also worry about my fertility for the future.
It’s shocking how you were treated. X
Hugs to every lady dealing with this is horrific disease. I to been diagnosed with Endo stage 4 at age 29. Been having pain almost every day for 2 years. Had endometriosis during my Nursing program and suffered my whole life with terrible period pains. I've been reading these message boards for a long time and this is my first comment. You ladies have helped me at my deepest hours. Knowing other wonderful woman are going thru this disease makes me feel stronger and determined to pull myself together the best I can. My first lap was exactly 2 weeks ago and today I had my follow up appt. Adhesions and endometriosis throughout my whole pelvic area. Left ovary and left fallopian tube was adhesed down to my uterus. 3 chocolate cyst removed from left ovary. Adhesions in Pouch of Douglas that was not removed. 2 fibroids on back of uterus not removed. Gyn says removing them may aff3ct fertility. Labor pains every day, painnin hips, and pains when using bathroom or passing gas. Random shooting pains in buttocks. Let's just life sucks. Thank you ladies for sharing your stories.
Endo in Pouch of Douglas 
Fluid in pouch of Douglas...
Endo on pouch of Douglas 
Fluid in Pouch of Douglas?
