Endo surgery

[Ncoowar]

Hi guys just wondered if anyone could share there experiences of stage 4 endo removal surgery. Any comments would be appreciated.

[Flower58]

Hi Ncoowar. I had my first lap on Monday and what was planned to be a 1 hour surgery ended up being a major 3 hour one. I had adhesions on top and on the bottom of my uterus, on my bowel and all over my pelvic cavity and sides. Although I won't find out the exact stage of my endo until the follow up appointment with the surgeon, its suspected to be stage 3 or 4 due to the severity. I was on a drip for 2 days and put on oxycodone.

When I woke up from the anaesthetic I was extremely dizzy and in a lot of pain. I had to have three nurses to help walk me over to the toilet so that I could pee. When I returned to the bed, I was having cramping and pains similar to contractions due to having a mirena (IUD) inserted and my cervix began to open and close repeatedly. I must admit - the pain was unbearable even on mega strong pain relief. All the gas from the lap, had pushed to my right side and created this extreme bulge on my abdomen that felt hard to touch. This meant I had to use my left side to support myself as much as I possibly could. I passed some blood clots and bleeding but nothing major.

Two days later I am home and having to use a walking frame to move around. Im taking oxycodone every 2 hours and paracetamol every 4. The stitches are itchy and my right side is still very bloated and hard. The contraction cramps started up again yesterday and I was left laying on the couch screaming and squeezing my mums hand every time it cramped. I have to keep my compression socks on due to me not being able to move around much at all. I'm simply just eating jelly and custard as its the only thing I can keep down. Im bleeding still and have barely any control over my bladder and bowel. Mums having to shower me, replace my pads, feed me and look after my medication. I have no energy, but a whole lot of pain and discomfort.

Everyone recovers and heals differently. I'm only 16 and this was my first lap ever - the pain is all new to me. My body has gone from having adhesions stuck to its organs for 6 years, to having most of them cut out. Its both emotionally and physically painful, but I know it will get better. My best advice for you is to not push yourself and let your body heal post surgery. School and work can wait - your health comes first. It's going to be painful no matter how much endo is removed, but you need to look after yourself.

It's also best to keep in mind that the stage of your endo does not decide the amount of pain you will have. Someone could have stage 4 with little pain whilst another will have stage 1 and severe pain. It attacks everyone differently. Make sure you prepare yourself before your op. Pack an overnight bag, organise transport, make sure someone will be looking after you, get a few good heat packs, wash your hair the day before surgery, stock up on pads/tampons, organise to have a walking frame/stick, make sure you have a plastic chair in the shower to sit on, put everything that you will need (medication, clothes, laptop etc) in a small walking distance. And its important to walk just a little every day, as it can actually help with the pain.

Best of luck to you xo

[Hidden in reply to Flower58]

Did you have a surgery earlier?

I'm curious since having adhesions for 6 years straight with endo would not happen all the sudden, unless of course your menarche was earlier and your symptoms developed later.

Endometriosis develops over time, it normally starts in a small area and moves out attacking other organs and sticking them together in a web like pattern.

I've had periods for almost 10 years (I'm 17) and in my case I didn't experience any pain except for the odd ovarian cyst rupture till last year when I believe I developed an ovarian torsion. By my last period in July the pain had spread to my chest with the slight taste of blood in my mouth and I also bled out of either my rectum or urethra. My right Fallopian tube even sticks out of my abdomen and I've had no previous surgeries but I am awaiting a diagnosis.

I only had symptoms for 8 years such as diahrea, blood in urine, clots, heavy bleeding that developed when I turned 16.

[Flower58 in reply to Hidden]

Hi Hannah,

This was my first lap. However, I have had an endoscopy and colonoscopy before. Im 16 and have had bowel related symptoms and extremely painful periods since the age of ten. I was initially told my periods were normal and I had IBS. It wasn't until 2015 that I started getting chronic pelvic pain, irregular bleeding, severe constipation etc on top of everything else.

I was placed on birth control at 13 due to my awful periods, so I assume that the pill had disguised the endo pain (my gynaecologist said this could be the case too) for some time until my body got used to that pill and my pain came back. I then tried another pill which my body got used to after 3 months and the terrible pain and bleeding one again started.

My mum and sister have endo as well, and they didn't develop pain until they were adults - despite being told it had been growing for a while.

I asked the surgeon how long the adhesions had been there for and she said that there was so many she assumes that they started growing since my first period (which was when I was 11) because endometriosis is a hormonal thing.

It's very odd how endo affects everyone differently - if the pain I had when I was 10 was as bad as the pain I have now, I would have seen a gynaecologist many years ago.

So in a way I have ALWAYS had pain, but it didn't become severe until 2015.

I will definitely be researching into it more.

[Hidden in reply to Flower58]

I agree I would've seen one earlier too, U was also born with a premature uterus and had a really early period but my doctor told my mom to not worry even though I was sick for the week before.

My mom had horrid periods but then grew out of it, then she had surgery to remove a golf ball sized cyst on her ovary, they thought it was cancerous but it ended up not being and they put her on an IUD, they didn't tell her anything else or give her doctors notes so no one knows if it was endo. I only suspect.

My grandmother said her period were horrible but she left it at that.

My one aunt has had no period pain but she's been on the pill for years.

And my other aunt was believed to be infertile for years.

I've been told mine has been growing since I was 8, my peaditrician even apologized because she said she didn't know any better.

[Flower58 in reply to Hidden]

Such a shame isn't it? They never took any notes at all when mum had her adhesions cut out back in 2003. They never took a biopsy at all either to test for endometriosis cells present. My surgeon told me that its very likely that it was endo considering I have it also. I feel so sorry for all the girls out there that were never properly diagnosed.

[Hidden in reply to Flower58]

I feel it's important that they are though b/c it not only helps them but their family who may also be effected.

[Ncoowar in reply to Flower58]

Thank you for sharing your experience x

[emmab178]

I've not got experience of this but I would recommend researching the surgeon who is doing it and making sure you are comfortable with their skills to do this complex surgery. If in the uk it should be done at a bgse centre with an approved surgeon

[Hidden]

Ncoowar, if it's excision surgery (I assume it is since you said removal) by an experienced surgeon then it depends on how much tissue they can remove.

Sometimes women receive excision surgery and don't have any symptoms or pain for 10 years while others experience pain a few weeks or months later.

Likewise the pain sometimes associated with excision may just be caused by adhesions which are a common side effect of surgery. Organs get sticky when they are exposed to air during surgery and then they stick together. Think of when you touch an ice cube or someting icy and it sticks to your fingers/hand.

As for recovery and time it might take longer for excision then it does for diathermy since as to burning and cauterizing the endo to the first layer of the tissue they remove the tissue completely. Also if it's a laparotomy it will take longer to heal then a laproscopy.

Try to take it easy afterwards, drink peppermint tea to get rid of gas and try to walk for little amounts.

I disagree with a comment form earlier, stages do matter, although some stage 4's may not feel pain they may experience symptoms, and the opposite can go fro stage ones.

Endometriosis is graded on severity of tissue growth, cysts, adhesions, and placement of tissue, as well as likelyhood of infertility.

There is no definite cure for endometriosis so after surgery try to take a hormonal treatment if you aren't already on one, try the mini pill or a medication specifically made for endometriosis.

Hope your surgery goes well

[Flower58 in reply to Hidden]

Hannah - I never said stages didn't matter... Please read my comment properly before making comments about me.

I said that your pain level does not determine your stage. You could have heaps of pain and have stage 1, or little pain and stage 4. Some girls don't even know they have endometriosis until they have problems with fertility. It affects everyone differently. I am not comparing anyones pain to one another or saying your pain is not real. I am simply repeating what I have been told from PROFESSIONAL SURGEONS/GYNAECOLOGISTS.

Of course endo doesn't only bring pain...did you not read the part where I said I have severe endo myself? I know the symptoms all too well. Constipation, migraines, nausea, bloating, irregular bleeding, heavy bleeding, joint pain, hip pain, TERRIBLE periods. There are a number of other symptoms endo brings. All I was trying to say was that ENDO AFFECTS EVERYONE DIFFERENTLY.

Ncoowar asked for other peoples experience with removal of stage 4 endo so I gave her my experience.

Good to see you have done your research on it, but you need to understand that just because one doctor or one website says something, does not mean it applies to everyone who suffers with endometriosis. It attacks anyone at anytime. One might experience one symptom while another may not - yet they still both suffer from endometriosis either way.

This is a SUPPORT group. It is not meant to bring others down. Endo sisters are meant to be there for each other - they are not supposed to deny someones health or imply that we don't know what we are talking about. Many other girls apart of this group didn't develop pain or endo related symptoms until later on down the track, despite being told the endo had been growing for quite some time. (just like me)

Trust me; I have been in pain for 6 years and have seen multiple doctors and had plenty hospital visits - I know what I'm talking about. I trust the information I get from surgeons who actually saw my endometriosis more than someone who hasn't even known my medical history or been there during all the doctor visits.

And if a doctor who has treated many other girls with endometriosis, says it has been growing since my first period, then I will believe them.

Please just keep in mind that we all are suffering and that we know our bodies more than anyone else. You were not there when doctors spoke to us, or when we had our diagnostic laparoscopy.

Best of luck to you.

And to Ncoowar - please do not feel scared about your surgery. I know the thought of having it done makes us worry, but if they find endo, they will get rid of it. Unfortunately it can grow back but you must stay positive. Chronic illness can really affect our mental health, but we truely are endo warriors. We can get through this! Your pain does not define you. You have amazing women on this site (of all ages) who know what you're going through. We are all here for you. just because I'm having quite a hard time recovering from endometriosis removal through a laparoscopy does not mean you will too. Either way you will have relief to some extent, if endo is removed. My mum's bowel adhered to her uterus and she had it detached and she's been fine since - you could be that lucky as well, you never know. Best of luck to you and I hope you have a speedy recovery! feel free to message me anytime if you have any questions or just need someone to talk to <3 xx

p.s Lindle also does a lot for us endo sisters, so make sure to talk to her as well if you have any questions. She knows what she's talking about

[Hidden in reply to Flower58]

I was saying that the tissue wasn't always fusing everything together and I wasn't accusing you of anything I'm sorry if you took it the wrong way.

I've read numerous books, papers, spoken to numerous doctors and they've all told me that yes growth does start with an menarche however everything won't get bad all the sudden b/c it is in fact a progressive disease.

What I'm trying to say is that having organs adhered together right after your first period (I'm assuming 6 years ago) is impossible since it would have to happen over time. The disease grows and spread just like cancer, if you get cancer in your ovaries it isn't gonna spread to your lungs in the same day (I'm exaggerating).

I know my Fallopian tube didn't always stick out and I never experienced pain till this year aside from ovarian cysts, where they found fluid allover in ultrasounds but didn't refer me to gynaecology b/c I didn't get period pain and I kept thinking I got the stomach flu once a month.

I'm sorry that I misread your comment also.

[Flower58 in reply to Hidden]

Perhaps I should have re-phased my comment. They said the endo would have started growing since I was 11, I did not mean that all these adhesions just popped up out of thin air all of a sudden. I understand fully that endometriosis grows and grows. In my case, because this was my first lap after 6 years of adhesions growing, that it why mine was so severe.

Hopefully next time they begin to grow back I will be able to detect early signs and see the gynaecologist again.

Have you seen a gynaecologist for your pain/symptoms?

[Hidden in reply to Flower58]

I've seen 2, I'm waiting my surgery but their unsure of what it is, the gyno thinks it's caused by scoliosis (I have a curve at my lungs) but the doctor I saw for my spine said my menstraul back pain was unrelated. My peaditrician, emergency room doctors, physiotherapist, and even clinic doctors all think I have endo and own said judging by my symptoms it had gone to my diaphragm.

Unfourtenyly I'm in Canada so there aren't any speacilsts here.

[Flower58 in reply to Hidden]

Thats awful to hear what you're going through. It's such an awful disease - and for something so comment you would think there would be more awareness? I live 2 hours outside of Adelaide (Australia) and we have 2 laparoscopy surgeons and a small handful of gynaecologists. I hope you get a diagnosis soon.

I have a benign brain tumour which has made me develop epilepsy... I wonder if there is any link between these two and my endo?

[Hidden in reply to Flower58]

Endo has been found on the brain. I have one on my brain too. Strange enough on my period I'd get this weird limp and other neurological symptoms, but trying to convince doctors without making them think we're crazy is tough. Like my foot would drag behind.

I also have a breakout on my face that's been there since I was 16, the week before my period it swells up and hurts, the first day it bleeds or feels awful then it shrinks, it's still on my face under the skin but it doesn't show, my dermatologist saw it and said it was benign.

Unfortunately women's health has only been brought into the picture in the past few years. Hormonal contraceptives were developed in concentration camps to sterlaize Jewish people, odd enough. And hysteria was the most common label for women's health issues almost 100 years ago. Also the side effects of some medications are only studied for males and therefore are dangerous for females (there was a stomach one and someone died I think).

I think if we put more focus on women's health we can treat these issues better.

Somehow you'll see a commercial for Viagra after 8 but never a commercial about what a period should be.

[Flower58 in reply to Hidden]

Really? how interesting! I have a limp on my right hip when I have my period..perhaps it is related to our tumours? I have a rash on my forehead that comes on my period as well.. tried every topical cream and medication to clear it but no success.

Womens health awareness definitely has a long way to go! did you see how they trailed male birth control but stopped because they complained about mood swings, depression, acne breakouts (and all the other side affects we get)? what a joke. So sad to know so many of us are suffering from gynaecological issues yet we're barely given any help.

I'm just one of the lucky ones to have seen a good gynaecologist that takes me seriously

[Hidden in reply to Flower58]

I tried everything for my bump too, things were even prescribed and the doctor couldn't figure out why it would go away. On one pill it even grew huge and my gyno was shocked.

They should've forwarded research on male birth control because maybe it could help further their research in gynaecological issues. Supposedly endometriosis has been found in men on estrogen therpay for testicular cancer.

[Flower58 in reply to Hidden]

Couldn't agree more with you.

[Ncoowar in reply to Flower58]

Thank you Hannah xx

[Hidden]

I'm unsure that's what the ER doctor explained to me when I was about to get an apendectomy but my CT scan was fine.

It's unrelated to endo adhesions, its surgical adhesions.

He explained that organs aren't used to being out in the air b/c they're supposed to be closed up (if that makes sense) and they're normally in a 'moist' (I hate this word) environment so when they're introduced to air it drys them out and while they dry out they get sticky.

He could've just told me that so that I wouldn't get surgery b/c he was also saying I didn't want an apendectomy or laproscopy scar b/c I could never wear bikinis again.

[Flower58]

Not very nice of the doctor either to try and turn you off surgery because of scars. If a patient is in a lot of pain, scars should be the least of their concerns! I would rather have thousands of scars on my body than to live with the pain and symptoms of endometriosis.

[Ncoowar]

There's one thing I've been worried about and that's possible damage to bowel and bladder while endo removal. 😒

[Flower58 in reply to Ncoowar]

I had the exact same fear as well! unfortunately all surgeries carry risks. When the surgeon told me that she had left one adhesion on the bowel because of the risk of damage to the bowel, I didn't know wether to feel relieved or worried.

Its really an awful situation to be in - you want relief from pain, but you also are fearful of what can happen as an result of the surgery. However the best thing to do is to stay positive, I know its really hard to during a very scary time, but you never know what will happen. You may have adhesions on your bowel and your surgeon may decide not to remove it just as mine did. It's all up to what the surgeon thinks will be the best option.

Maybe you could talk more with girls on here who have had endo on the bowel? discuss how they approached it, if it was removed, and how they handled it when damage was made to the bowel (if damage was done)? I found that by preparing myself of all the possibilities that could happen during surgery, I wasn't as shocked when I heard the news after waking up from the lap. However, everyone has their own ways of coping with things - you may find my technique does not help you. Some people on here find it easier to keep an open mind and stay positive and if anything happens, they like to face it when the time comes rather than thinking and worrying over it before it even happens. Everyone is different!

I know I've already said it but please feel free to message me anytime if you are finding things hard to cope with, or have any concerns. I know just how much endo can have an affect on your mental health, and I want to do everything I possibly can to help girls who are suffering.

let me know how everything goes hun xx

[Ncoowar in reply to Flower58]

Hi thank you so much your words are encouraging. I'm trying to stay positive but as the day approaches I'm getting nervous. People sometimes don't realise what endo sufferers go through on daily basis. The prostap treatment has triggered major inflammation in my joints I'm in constant pain from that as well. I guess I just want to get things done and out way so to try lead a normal life. It's great that there are places like this for woman to meet as before that I felt like no one really paid much attention to endo. This forum / site is great learnt so many things and it's encouraging xxx

[Flower58 in reply to Ncoowar]

It's okay to feel nervous as the days approach, I will admit I was quite a mess myself! Surprisingly though, when I was on the bed talking with the surgeon, I was very calm. I guess I was just finally relieved to know I was going to find out what was wrong with me. Be in touch with your emotions and allow yourself to cry if you need to. Try meditating or listening to some calming music before hand.

People will never truely understand the weight that endo has on us - until they or a loved one experiences it themselves. Its incredibly unfortunate that its like this, but just remember that you will gain a lot of strength from going through what you have.

I understand the pain that you in your joints. Goodness, I can barely even walk sometimes because of it. I have hyper extensive joints on top which makes the flare ups real bad! You can buy heat packs from the pharmacy that have straps on them, I find this helps especially for knee pain. Try Epsom salts too, they can help relax your muscles.

I can already feel relief after my lap, and I'm ready to go out and get my life back. I can't wait to go out with my friends, go to the beach and just enjoy living again. I have come to terms with this being a life long disease (and you will too), and I know that it will probably grow back. But I'm not going to take my life for granted. I'm going to live every moment of it wether if I'm in pain or not.

Don't forget to fight for the treatment you deserve!

I will be thinking of you, and I really do hope everything goes well for you! Endo may be a bitch but you have your whole life ahead of you xx