Endometriosis

[Gembo]

I would get the lap done. My Endo makes sex really painful to the point where I can't do it.

Thank you, I am so worried to get it done. I really appreciate your advice I think I will talk to my consultant again x

 

[openbook1]

Hi,
I had my surgery today. It was a laproscopy and excision with a Nancy's Nook recommended Endo specialist. https://m.facebook.com/groups/2285418136991574617/

My surgery took over 3 hours. The surgeon cut out Endo above my bladder and my pelvic wall. He took photos which I have a copy of and see him in 8 weeks for a follow up.

I am home now. I had a catheter and cyscoscope so it really burns to wee. My gas pain isn't too bad and my incision pain is ok, I have 4 incision holes. Quite scared to do my first post op poop, LOL. I have a prescription for pain killers, anti inflammatory and laxative.

 

[pinksparkles91]

I am, 3 surgeries in 3 years and now been on the zoladex for a year and It puts me in a menopause except I'm only 27

 

[openbook1]

Sorry to jump on. But just wondering if any of you can identify with my symptoms?

I’ve been wondering if I have it. My whole life I’ve been so worried about getting it. I have no family history or anything I just know how hard it can be to go through so I’m so worried

I’m 25. My actual periods are fine, very regular, not too heavy and last 4ish days. I can have cramping on the actual day I start but it’s very manageable, I often don’t need pain killers or anything. This has been the case my whole life. I have been tracking my period for years and I’d say I’m very in tune with my body. I know immediately when something is off, especially in terms of my reproductive health because of how closely I monitor it.

When looking at endo symptoms it says things like ‘painful urination, painful bowel movements, painful sex’ but does it literally mean burning when peeing, pain when actually having a bowel movement and painful sex as in, actually pain vaginally during sex? This is where I’m confused. My pain happens after and not in the actual site but in my uterus/pelvis.

Over the last year and a half / 2 years I have noticed every month, 14 days before I start my period I get horrendous cramping, mainly towards the left side (where my ovary would be). It feels very different to my usual period cramps which is usually more central and less intense. It’s not constant, but I have flare ups of the pain several times a day (many times). I also have flare ups during the night and it wakes me out of my sleep (my normal period pain has never done this). When it wakes me I end up literally rolling around in bed, practically in tears, trying to find a comfortable position or some way to relieve it.

I have noticed things will aggravate it and cause a flare up of pain. At first I thought I was crazy. Basically
- A few minutes after peeing, I have a flare up.
- A few minutes after bowel movements (sorry if that’s tmi), I have a flare up
- A few minutes after sex or during, I have a flare up. During the time of these flare ups I definitely put off having sex because I don’t want to have to go through the pain following.
- A few minutes after or during exercise, I have a flare up
- A few minutes after or during cleaning (like hoovering, bending lots etc) I have a flare up
- After sneezing, coughing or even really laughing etc
- It almost like anything that uses my lower abdominal muscles causes me to have a flare up.

BUT it only happens within the 14 days before my period is due, lasts about 10 days then stops then a few days later I get my period which is totally manageable. I can literally predict all of it. It happens like clockwork every month. Each flare up lasts about 20 minutes. Taking pain medicine hasn’t helped (I’ve tried paracetamol and ibuprofen - I’ve never tried or needed anything stronger).

In the past 4 months I’ve noticed I can also not only feel it on the left of my pelvis but also in the left side of my back (which has me worried that that means it’s getting worse). The pain in my back is almost unbearable, it feels so deep, instinctively I feel like I need to rub the area, or punch (sounds ridiculous I know) but I can’t ever ‘reach’ the pain to relieve it. If that makes any sense?

I’m currently within the 14 days now and this month my left leg has also really been bothered. I’m not sure if the pelvic pain is causing my back pain then the back pain causing the leg pain.

Just wondering if anyone else has had similar experiences? Sorry if some of it makes no sense. It’s so hard to explain all the stuff going on without writing pages and pages (which I have probably done anyway so sorry again).

Hey,

I would try and get checked if I were you. The first thing I would do is trying to find a gynecologist experienced with endo, I found general doctors (in the UK) to be useless. Check out this map of endo doctors. https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4

Your symptoms do sound like they could be endo. I don't always have pain, in fact, my pain is the worst towards the end of my period. I am on the Depo shot now so don't get my period as frequently.

What is the leg pain like?

My symptoms:
- pain in thighs, that feels like I have done a really hard workout and it hurts to walk
- pain in my hips, pelvis, and lower back. It is really hard to describe but feels like my lower pelvis is being put through a grinder. I end up on the floor screaming and a bath is the only thing that helps.
- when I do a bowel movement it relieves the pain a bit but only for a few minutes.
- pain during sex. Not in the vagina but in my lower, back, pelvis, and hips, the same pain I mentioned above.

I would recommend requesting an MRI. They may suggest an ultrasound too but they rarely pick up endo, whereas MRI imaging is a little more likely to. I had an MRI and it showed my endo in my posterior culdesac. It is worth getting an MRI done too, in case there is a problem that isn't endo.

 

[openbook1]

How are you feeling?! Sending you love and i hope you have a speedy recovery. I would recommend taking laxatives right away, will help in the long run! I bet you are relieved to finally know whats been going on!

Hi,
I am doing quite well thanks. I have not been taking the opioids that they prescribed as I find Tylenol is working just fine for me. Plus, the opioids in the hospital made me nauseous and vomit and I don't want to be straining my stomach through vomiting. I had some pain in my shoulders, chest, and ribs last night from the gas they put in but I am okay today. I also managed to go number 2, lol. I started laxatives two days before my surgery and took some last night, so hopefully, I will be okay. I have been having foods with a lot of fiber and drinking plenty of fluids too

 

[openbook1]

Good luck! I had lap & excision (along with a hysteroscopy & tube flush - I was struggling to get pregnant & Long history of endo) in 2012. Rest helped! Lie around watching shit telly. I hope it goes well - let us know x

Hey, I already had it. It will be 7 days post-op tomorrow. Surprisingly, my recovery so far has been "easy." The first two days post-op I had pain but it wasn't unbearable and I did not have to take the prescription opioids, I just took OTC painkillers. The pain I would get with an endo flare-up was far worse. I slept elevated for the first 3 nights and then on Fri, I was able to start sleeping on my side again, and Sat and Sun I was fine laying lower down and sleeping on my stomach. My stomach was bloated but has since gone down and looks normal again. I have managed to walk around the block which is nice. I now only have a few twinges every now and then. I am tired though so am still taking it easy xx

 

[bubbletea123]

I had endo show up on an MRI in my low back/posterior culdesac, pelvis and hips. Apparently, it is rare for it to even show on an MRI.

My symptoms started a few years ago but have gotten worse. My mum also has endo.

I am on depo provera which has worked great up until this year where I have had more bleeding than ever and endo pain.

My symptoms: low back, pelvis and hip pain. Like a pressure or my body is being put through a grinder. It is prob a 9 out of 10. Last time I had the pain, I was on the floor hysterical and thought I was going to pass out. Sometimes a stabbing pain in my bum.

In the past five weeks, I have had four separate periods.

I am finally seeing an endo specialist tomorrow who specialises in removing the endo. Fingers crossed it goes well. My doctor has mentioned Lupron to me since Depo isn't working much now but I really don't fancy trying it as I have read so many stories of people feeling suicidal on it and lots of lawsuits. Depo is already quite controversial and is as far as I am willing to go in terms of hormones.

I feel like I need to have it removed though as I can't even have sex as it is so painful. I also think I don't know what I would do if my SO and I ever wanted a baby as I couldn't go through this pain every month trying to conceive.

Has anyone seen a specialist? What questions did you ask them?

I already have some wrote down and stuff about me but thought I would ask here too.

 

[Leascarle]

I’ve been living with my diagnosis for almost 20 years feel free to PM if you want to chat x

 

[openbook1]

I hope it’s ok to ask this here but does anyone know how endometriosis makes sex painful? Over the past year it’s become pretty painful for me on almost every occasion. I went to the Dr and have now had some scans which of course show nothing so they want to do a laparoscopy as they think I have endometriosis. But I’m not convinced, I do occasionally get pretty painful periods but not every time. Sometimes it’s bad enough to make me cry or just really really painful but painkillers do usually make it bearable or get rid of it. I don’t feel my period pains are an issue, I only seem to get them right at the start and I know someone who has pains so bad she’s in bed for days. Mine are nothing like that. My problem is really just the painful sex. I don’t know whether to go through with lap or not, obviously I’d rather not but I just don’t see how it will help diagnose anything to do with painful intercourse. It’s really getting me down and I dont know what to do.

I would get the lap done. My Endo makes sex really painful to the point where I can't do it.

 

[Pussy Galore]

Omg yes!! I've just had my 5th surgery, 2nd excision surgery in 2 years.

 

[joonielovers]

17 and been diagnosed with endo, been in pain since i first got my period at 11. the gynae has put me on the contraceptive pill to stop my periods, it has helped with the pain but they said they didn't want to go any further as i am 'too young'. really upsets me and unsure what to do as the nhs is a mess. they only treated me properly when i was rushing into A&E last september and i ended up being on the IV drip for two days. i've missed lots of school from it and my anxiety is also worse because of it.

 

[Frensham90]

Just wondering if any other tattlers are sufferers?

 

[Pussy Galore]

1000000% reccomend searching for a BSGE centre for an endometriosis specialist in the UK. I am under Mr Khazali

 

[Leascarle]

I am x

 

[sarahboo]

So, did he not remove anything? Was he just a regular gynecologist or an endometriosis excision specialist? The latter is harder to come by but will make all of the difference in terms of diagnosis and removal... most normal gyns can't even identify endo properly. I would put a request in with your GP to get a referral to a specialist, not just a regular gynecologist. You may have to push for it but don't give up. I am not sure where you are but here are a few links... also, make sure they specialise in excision removal NOT ablation... ablation just burns it off from the top, like pulling a weed without removing the root. Excision removes it completely with the root. Good luck. I found my surgeon through the Nancy Nook fb page.

The Endometriosis Clinic - Treatment for Endometriosis

An explanation of The Endometriosis Clinic's approach to the treatment of different forms of endometriosis

www.endometriosisclinic.co.uk

Gynaecology - Overview

Information about our gynaecology service.

www.guysandstthomas.nhs.uk

Reddit - Dive into anything

www.reddit.com

https://www.google.com/maps/d/viewer?usp=sharing&mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4 (map of surgeons, may have details as to if they are specialists or not)

https://www.facebook.com/groups/2285228523784418136991574617/

Oh my goodness thank you so much for this, it's really helpful. I really appreciate it!! No he just done the lap & didn't remove anything. He was just a regular gyny, the lap was the last option of diagnosis because the tests before didn't really show much.

 

[Vee6]

Bumping this. I am having my lap and excision next week... I am really nervous. If you have had both, what helped you recover?

I had both in 2014 and I was sent home about three hours after the op. I think the scars were just slightly tender and I was tired from the GA. so pleased with how it went, cleared up my endo and it’s only now six years later that my periods are starting to get more painful again, although nothing like ore surgery

 

[Frensham90]

Omg yes!! I've just had my 5th surgery, 2nd excision surgery in 2 years.

Wow, so sorry you’ve had to go through so many surgeries.

 

[bubbletea123]

I am, 3 surgeries in 3 years and now been on the zoladex for a year and It puts me in a menopause except I'm only 27

Oh no. Did you have ablation surgery or excision?

 

[Pussy Galore]

Bumping this. I am having my lap and excision next week... I am really nervous. If you have had both, what helped you recover?

Lots of rest after, i had peppermint tea to help the gas pass, keep hydrated and again plenty of rest!
Don't be afraid to ask for pain relief to take home - also dont compare your recovery times to others and have an "expectation" all 5 of my surgeries have had different recovery times.
Good luck

 

[pinkypurr]

yes you will unfortunately see me on the PCOS thread too.
Endo is painful I suffered for years pre my official diagnosis. I was actually pleased to get periods after about 10 years of hardly any due to the PCOS being dominant.I have had a horrible surgery but I still have pain
Its so frustrating and not fair