Endo diagnosis 1st lap can anyone help?!

Hey ladies!

It's my first time on any of these forums just wondered if anyone could give me advice on their experiences and maybe shed some light?

I got admitted to hospital with crippling pain to the point where I passed out in July of this year.Since then I've suffered a lot with fatigue,pelvic pain,pain when going to the toilet etc...After 2 ultrasounds and a consultation fast forward to this week I had a laproscapy on thurs...

It's all kind of happened fairly quickly (which is good) however I've been left with lots of unanswered questions...

When I came round the surgeon told me he had to do 4 incisions instead of 2 as it was a bit more complicated..apparently a cyst was removed from my left overy,fallopian tubes are clear but I have severe endometrosis in the pelvic area and the bowel.I was told I'd get a follow up appointment in 8 weeks then sent on my way!

Now obviously my mind is going over time..I wasn't given any aftercare advice or even told what endometrosis is..I've done a little reading on the internet but unsure what this means from here? Do you know when I should bath,remove dressings on stitches,or go back to work? (I was given a sick note for a week however I'm an air hostess so I don't know if I should take off longer due to the flying?)

And is this follow up appointment literally an appointment or does it involve removing this endometrosis?

Also I've read things about gluten free diets etc..I wondered if that helped anyone else's symptoms ease?

Sorry for all the questions! I'm just clueless and feel quite alone at the moment..have spoken to some friends but nobody really seems interested and nobody seems to understand what I'm going through and the whole things just getting me down and making me very emotional

11 Replies

oldestnewest
  • Hiya, if you Google the endo diet it will tell you what inflams endo and c what doesn't. Good wise. I find gluten ok, but definite no to diary, wheat, Caffeine, chocolate and fried foods.

    It's helped me a lot. People without endo don't understand and I always get people saying just eat it. (One of my no food s) but then they won't have to have the pain will they.

    It's around 3/4 days for bandages and a week for a bath. But a showers ok.

    Being on your feet in your job I would take two weeks min.

    Although with you flying I would book gp and ask him. To be safe.

    I'm glad your op went well. And your tubes are clear.

    Come on here and rant to us, cos no one will get it

    Happy recovering, best time to relax is now to regain your strength

    Hugs xxx

  • With regards to the bandages. Maybe Google it to be sure as that's what time frames I've read on here. My lap Friday argggh :)

    Least I'm off for Christmas tho x

  • Hello!

    I was in exactly the same situation as you (cyst on left ovary, endo in bowels etc and mine is also in my bladder).

    I gave it a week before I had a bath and the first bath was amazing. I think it helped with the stitches too. I'd say don't worry about them, over time they definitely remove themselves and you can hardly see my (4) small scars now. I'd say at least two weeks off work but you may need more depending on the pain etc.

    With regards to advice, Again I was told very little. The surgeon was not a specialist though and I have read on here that it's better to be referred to a specialist hospital. There's one near me that I had the choice of but I didn't know they existed! If I wanted any more removed I'd go there. There's a list online, just google.

    With regards to removal of more endo, I've been told it's my choice. The cyst came back within a few months so I manage it with pain meds but I try and go without them as they make me spaced out. I'd say keep pushing your doctor to find a combination that suits you with your work, if you need them.

    I think if I were you, I'd look up the specialist hospitals and if there's one you can go to ask for a referral there. My hospital said they'd do it as they're not the experts and it's difficult to remove endo, especially on the bowel as you may have a stoma (temporarily or otherwise). It's a big decision that you need advice with.

    With regards to diet, I have noticed dairy isn't great for me and nor is alcohol (although I keep trying!).

    Good luck, I hope that answered your questions.

    X

  • Hi there, sorry your dealing with all this, but at least your on the right road, and been diagnosed,

    Now that you are diagnosed and due to the location of the endo, you will need to be seen and operated on by a BSGE centre specialist, if you are not being seen at one, I would go back to GPs and get referred Asap, you can do this now before your 8week check,

    Endometriosis is similar to the endometrium lining in our uterus, this is what sheds every month giving us our periods, these cells grow on and around different areas in our pelvic/abdomen and can cause inflammation, and pain, etc.

    look up a lady called Lindle, she has a few posts that will explain everything in more detail, and advice how to go about getting this referral, but just bare in mind for now, you are in titled to see a specialist, under a contract with the nhs,

    It's a lot to take in I know, but knowledge is your best friend, especially when we suffer from Endo, it is very under advised as far as GPS go,

    A general gyne will not have had suitable training, and hence the specialists,

    There are medication that can suppress your endo and possibly the symptoms, and the duet is good, but nothing can treat it as well as another laporscopy and removal (full excision) of the endo itself,

    If you have any questions fire away, I or someone will do our best to answer.

    Good luck

    Xxx

  • Sorry diet, not duet,

  • Awwwww Thankyou so much for all your helpful comments ladies!

    I'm guessing it's going to be a long road from here on but at least it's going in the right direction.

    xx

  • Don't panic my lovely. It's time to start the trial and error process for you, not everything works for everyone so try everything you can (home remedies) because you will find something that works, I have adjusted my diet a lot over the years but Gluten has never been a problem for me (thankfully), stay away from known irritants - chilli - caffeine etc.

    Heat will be your friend, I have an electric heat pad next to my bed and it gets used loads! Daily gentle exercise will be really helpful too - I do yoga now and it is magic, because, as you will be experiencing, anxiety goes hand in hand with a diagnosis like this. Do lots of calming things to keep you de-stressed and balanced.

    Keep reading up, there is oodles of research out there but check your sources - the endometriosis UK website is really good and very informative.

    Grumble to us - we know how you are feeling, we understand what you are going through and it will take the burden of guilt off you if you feel that your loved ones don't quite get it.

    If you don't feel you have been given sufficient information call your surgeons secretary and let her know what your questions are. One week off may not be enough so pop to the GP and they can make the assessment.

    And lastly, stay positive, yes it's really pants but you are not alone, you may not know us but we are all here for you, we are all fighting the same fight and we can, through the tears, keep smiling and support each other.

    Chin up chook xxxxx

  • Thanks Elwood that's really helpful..my partner and I fell out just before the lap (mainly through me being moody,tired all the time as were usually very active etc so the arguments started) but he has called and txt a lot since my diagnosis trying to be supportive and saying everything makes sense now so I'm hoping when we meet tomorrow we can get everything sorted.

    It's very scary! I've been applying for new jobs because my body just can't cope with the affects of flying (I've been struggling with the shifts etc for months) so I've been trying to find an office job but I don't know if that's for me or if now is even the time to start changing jobs I just don't know what to do for the best..then of course there's the worry of getting pregnant in the future I'm 32 and my partner is 44 so we need to get a move on anyway regardless of hearing this diagnosis and as I said before nobody seems to understand people just think now I've had this lap I'll be ok once I've recovered from it but I'm obvs aware this is just the start of it...sorry for all the venting but I think that's the anxiety setting in! All I've done is think about this the last few days and how I don't want it to control my life xx

  • Don't apologise, that's what we are here for! :)

    I have done my utmost to make sure I control the endo not it control me, I have made sure that none of the decisions I make are based on the endo, sometimes easier said than done. I have had to cancel things once in a while and I have had to deal with the embarrassment of being bent double on the floor when I have been in company or in public, but I think people appreciate honesty. My colleagues are really good thankfully and my boss openly admits that he struggles because I don't look ill, but we have honest discussions which helps.

    I do an office job, but I have always done really. I did struggle behind the bar with my symptoms so I can imagine that they are heightened by standing a lot in the air, but don't make a rash decision. If you love your job don't change it just because of the endo, make changes because you feel they are right for you.

    I am glad your partner is coming round, it's really difficult from the outside looking in and as men don't regularly have abdo pain (like periods) it must be difficult to understand. I showed my husband the endo UK website and he understands a little more now. Get him involved in helping you, let him know if you are curled up in a ball that a cuppa and a hot water bottle is really soothing etc things like that will make him feel less hopeless. My husband helps me get out of bed earlier on a couple of days a week and we go for a gentle swim together and it's great, we have also started doing yoga together.

    I am also 32 so a little concerned about little ones, but it isn't a priority and what will be will be, for me anyway. I was diagnosed 9 years ago so I have had time to get my head around it all, you will too with a little time.

    Always here to chat if you need me

    Emma xx

  • This all sounds very familiar! Seems like you're not the only one who has been told you have endo then sent home with a list of questions, happened to me too! Had my first lap in October and was told similar to yourself but I was pretty out of it so couldn't take all of the info in. I had two weeks off work. I also felt very emotional after and kept crying at the slightest thing. Be kind to yourself, recover and don't rush back to early especially with your job. Your follow up appointment will be to discuss your results, they'd tell you if they were going to do any procedures. I'm waiting still for my follow up app so don't be surprised if you have to wait longer. Hope this helps a bit, anymore questions please ask xx

  • Your doctor shld have refered u but some have an ego liike mine and u must take it upon yourself to.do research and find an endo center or even a cancer center can help if u see an oncologist/gynecologist these docs are use to looking for cancer in hard to find plac es that your dear ass gyno can't. U usually need a referal. Find a cool G.P. and demand u want a referal there. U don't need a gyno to refer u. Get ur medical report from the hospital where u had ur surgery, take it to the G.P. don't ask what they think demand a referal. Then call the cancer center and ask to b booked with a doc that can treat ur endo. U want the best doc u can get. Also look for.doctors that are into that robotic surgery as they can see more than a regular surgeon can. Good luck listen to me ive been fighting this for 25 yrs. My endi is lodged between rectum and vagina a regular gyno is not skilled enough to handle this. Thank god I talked to a girl from work who was sent sent to Las Vegas women's cancer center as she had endo in her bowels like me but didint have to suffer for 25 YRS BECUZ SHE HAD A DOC THAT REFERED HER. LOTS OF LUCK. DONT GIVE UP.

You may also like...