I've spoken to a few of you in the past and just wanted to let you know what's happened. I've now been diagnosed with severe endometriosis (I haven't been told what grade yet) 😞 and interstitial cystitis which has resulted in my bladder being severely scarred and has cracked which part of the severe abdominal pain I've been experiencing. I cant say my gynes name but he has been phenomenal! He's called me a little warrior and been so sympathetic and kind throughout this whole ordeal. He's the type of person who lights up any room he's in and I feel he genuinely loves his job and helping people. He's given me a brief over view but has left me to recover over night before going in to more detail so we can discuss a plan because he needs to consult other specialists. He said he removed all the endo he could see but there is a lot on my bowel he had to leave so I will need further surgery(s).
I had an allergic reaction to something they'd given me and quickly deteriated after surgery but they managed to get it under control, flush my system, gave me drugs to - I'm guessing counteract it but I have no idea what but I'm now feeling much better. Anyone due to have surgery please don't worry this is extremely rare and even though I was scared the doctors acted very quickly and I knew I was in the best place and in the safest hands.
Once I have a full view of the situation I'll share this with you all. And if anyone has any questions at all don't be afraid to ask me. I might be slow at replying but I'll make sure to respond.
Scared for what the future holds for me but now I know it wasn't just all in my head and I'm not just "unlucky." I just wish I had been more persistent as I fear too much damage has been done now 😞
Keep fighting everyone, you are not alone 💛
Love to all of you warriors out there ❤️
Xxxx
Written by
LouLouT
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Oh I'm sorry your having a hard time. I have my first lap on the 8th and I am worr6what they will or will not find . Keep us posted on your recovery xxx
Lou, you have literally gone through the exact same ordeal as me... I just had my first lap on the 22nd if January and I am still in so much pain.
Since I was 16 years old I have experienced terrible pain during my period, I’m talking fainting, vomiting, collapsing & taking extended periods off school & work. All in all, I think it’s fair to say I visited about 7 different GPs (including my own) all of whom said ‘it’s normal, it’s just bad cramps’. Fast forward almost 12 years later, I finally had a GP that sent me for a pelvic ultrasound, as it was becoming debilitating for me. Low and behold what I suspected to be true was: I not only had Endometriosis but I also had ovarian cysts and a blocked Fallopian tube. Unfortunately there is a lack of accuracy is the pelvic ultrasounds as they are yet able to identify the full extend of Endometriosis, it wasn’t until I had laparoscopic surgery on Monday that they found I have severe Endometriosis that had infiltrated my pelvis, ovaries, bladder, bowels & Fallopian tubes - some of this is now irreversible. Unfortunately there is a good chance this will now also have a significant affect on my chances of having a baby in the future. But I have the same concerns as you, I feel like no one really knows how serious and debilitating this whole disease is
How are you managing after your lap? And are you going to get the bowel surgery? I also have to make that decision....
I literally just commented on one of your posts about recovery post lap. I hope you're feeling better today.
We've had such similar experiences it's crazy! We're like endo soul sisters 💛
I'm sorry you've been through so much - it's really tough. Especially when people don't/ can't understand.
My gyne said I'll need to see a recto vaginal specialist and have a colonoscopy before making the decision. He said I have severe endo on the outside of my bowel, 3 small patches on my pouch of douglas and a rectal vaginal nodule but they need to see whether it's penetrated my bowel. I don't know what I'll do, it's a really big decision. I've got so much on this year and next year don't know how I'm going to find the time for everything 😬 Do you know what you'll do?
Hi ❤️ Can I ask what your symptoms were post OP? I’m struggling with endometriosis and have done for the last two years, but I’m struggling to get any medical proffesional to take it seriously 😢 xxx
I know how you feel over the years I saw maybe 7 different doctors all sent me for tests but all came back normal. I got labelled with IBS for many many years so I stopped going to the doctors because every time I went I was just given more information on IBS and sent on my way.
Doctors didn't take me seriously because I would have a flare up then be fine and I wouldn't always go to the doctor so they didn't know how bad it was. I then found a sympathetic doctor who had come across endo in the past and he referred me to a gynaecologist.
Symptoms really vary from each person. For me it started with painful long heavy periods (lasting around 12 days). Very severe abdominal pain that is constant, at first I thought I had a UTI but the pain got worse until I kept fainting/ collapsing in pain until painkillers got the pain under control. Diarrhoea and constipation. Blood when having bowel movement, severe pain when having a bm. Pain that seems to move around from my hips, ovaries, ribs, right and left sides, lower back pain, shooting pains down my legs. Pain when urinating and blood in urine.
Have you been referred to a gyne? If you haven't I would really push for it, GP's aren't qualified to treat/ diagnose endo. Hence why they don't recognise the signs.
Are you unable to see a gynecologist without a referral from your general practitioner (gp?) ?
I'm an American and I know that england has an infinitely better healthcare system than over here so I'm curious, in general, about how things work within your healthcare system and other socialized systems... I also wholeheartedly support socialized systems and am rather jealous of countries that get to have nice things like healthcare and college and paid vacation time and fair/er wages and paid maternity/paternity leave and no 'right to work', 'private contractor', non-arbitration horse shit or a legislative body that, I assume, passes laws that reflect the will of the people more than 2% of the time, while we get a bigger military along with 'socialism for the rich and rugged individualism for the poor' [mlk jr] - God bless 'murica. But anyway, I could go on about how much I want out of the US but I promise that I won't, other than to say i have wanted out [so] badly since since the second year of obama's reign. That's all. Sorry for the rant, almost can't help it anymore.
Did you have to ask your gp to refer you to a gyno? Or do they have to come to that decision on their own? Could you find one on your own and start going to them for the yearly exams and/or for the period pain?
Did or do you ever have OAB symptoms? Having to pee constantly? I'm seeing a gyno on the 12th for a possible endometriosis diagnosis but went back to a urologist for nocturia and polyuria that I've had since 2012. I'm only 36 and definitely should NOT be having oab symptoms like i do so he will be looking for pinched/damaged nerves or ligaments in my upcoming pelvic CT. I didn't get confirmation that my recurrent period symptoms are possibly from endo until a few days ago which is when I also researched for a possible link between endo and oab. Anyway, I have to pee about every 90 mins at night: roughly 5-7 or 8 times every night (and day) since 2012.
When I'm on my period, I'm lucky if i last 45 mins. I have nightmares constantly about not being able to find a toilet and often have to change night shirts multiple times per night due to the sweating from my physical reactions to my nightmares. I don't have any incontinence though, thank God.
Did/do you have pain all the way to/in your back, roughly where your kidneys are, on both sides of your spine, and/or across your lower "stomach" just below your belly button?
I am sorry that you were misdiagnosed with ibs at all and especially, for so long. I'm glad you finally received a proper diagnosis and help. A lot of pain and suffering can come from not bloody knowing what is wrong so I am very glad you have the right answer.
I hope the damage to your bowels is superficial, I really do (colon and/or rectum? I don't know where the patch of david is - I also don't remember what you called it/it's called). Your shitty short straw situation hasn't broken you so far; keep up that same inner strength and hopefully this will just be another thing in your life that you defeated soundly. Or, a pot hole of sorts, if you will, that jarred you but didn't make your engine drop through its mountings, or crack any rims, destined to be just a memory in your rear view mirror rather than an unmovable rebar-reinforced concrete wall in the way of everything. sorry for the goofy reference, it's the best I have at 2303.
Also, I have found that, other than not being taken seriously by men about pain in general, women have been incredibly dismissive about probable endometriosis pain too. I went into an urgent care clinic, barely able to walk, described my symptoms so i could be seen and the woman at the desk laughed while presenting the customary [between women], all knowing, hand flick of dismissal that is almost always accompanied by 'yeah, I know what you mean'. Her reaction was the 4th similar reaction [from women] to my symptoms and attempt at finding help in 3 days.
I feel like if she, or anyone like her, actually knew what the eff I was feeling or what we effing feel, she [they] sure as hell would not laugh and wave off our symptoms. It was unbelievably hard to not challenge her attitude, so so hard.
As a side question: I watch lefty progressive YouTube channels and one of them said that the Torrey [not sure about the spelling] party is trying to push for changing some aspects of England's healthcare system and Australia's (i'm not sure if they call their conservative party but the same name) to copy our greed and profit- motivated system. Is that true???
I know Australia's system is much more like the us system than yours (I don't like their system but it is still better than what we have) so the conservatives there have a bit of a headstart over your conservative mp's.
Christ I need to try to find an adhd pi medication again - there's one left that I haven't tried. I apologize for this post and any headaches, eye strain, face palms, table-top forehead knocks, severe eye rolling or lip/mouth beeble-ing this post may have/probably caused.
Also I hadn't realized your post is from two years ago until I posted my questions so you've probably dealt with your bowel problem and I probably won't receive a reply. But so's life I guess.
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Had my first Gynae Appt yesterday...suggested options
Staying overnight for laparoscopy
Laparoscopy breathing tube
First laparoscopy 
I had surgery yesterday
