Lap confirmed endo, now a bit confused

[Rhiann]

I posted on here not long ago and I was really amazed by how supportive the responses were so thank you again to those people. Due to being in hospital for bowel impaction at the weekend (definitely endo related), they brought the lap forward and I had it this morning. I have stage 2 endometriosis on left ovary, pouch of douglas and uterosacral ligaments.

It's so relieving to know that there is a reason for all of the pain and weird symptoms we have to put up with, and I'm glad that it's only stage 2. However, I thought that standard procedure is for the surgeon to remove mild endo during the first lap, instead on my report it says that I have been discharged from the consultant and no follow up consultation is required, and no attempt at removal was made. There is a note for my GP to put me on the pill, which I am happy to take, I just don't understand why they didn't get rid of what they could.

I'm also a little dubious because I have pelvic pain, bowel issues and leg pain daily, can the pill really get rid of my symptoms when they are not just around my period? I know the pill prevents growth of the endo, but can it relieve the symptoms that I already have that have became independent from my cycle?

Also, I suffer from sciatica-like pain, but it doesn't seem based on the report that they checked around my nerves, do they as part of standard diagnostic procedure, or do you think it's been completely overlooked?

Sorry if some of these questions are obvious or stupid, but without a follow up consultation I literally don't have anyone with whom I can ask these things. I'm happy to have got a diagnosis, I just feel like I've been dropped now without so much of an explanation, apart from the not-so-detailed report.

If you have any idea what might be going on, or what I should do, or have just had a similar experience yourself PLEASE get in touch. I thought the diagnosis would make everything simple, but I'm more confused than ever!

Thank you for reading this very long post.

Rhi x

[LouiseABarnard94]

Normally you would have a follow up after your lap to see how you are getting on? Very weird just make sure. Be stern that you don't want to be signed off unless you know everything is all clear. First laps I've always been told they will everything if they can but if not they should tell you and should offer other treatments of another lap date.

I'm also on the pill my bowels are still all over the place so sadly it doesn't stop that but you might be different! I used to have my pill back to back then they wanted to me to have a break, they were so painful I've now gone back to having now breaks but it seems to be when I'm due I get the pain. It helps with pain it defo keeps it under control if they mention about having breaks just question why because I still don't understand it, surely having breaks makes the endo grow?

Call your GP or go back and ask why you've not had a follow up consultation! You can't just be dropped like a pin it's not fair even ring the PA of your Gyne department and question it. I used to get given a secuterys number and they are normally really good. Ring what ever numbers you can and go and see the GP you can't be left confused it's not fair.

Hope Your Well and recovering okay

Louise x

[Croydebay in reply to LouiseABarnard94]

Hi Rhiann

I had exactly the same experience as you I was never offered a discharge appointment. I had my first lap done and endo was found which the surgeon can round and told me just after waking up she told me where if had it and go ether have the coil or take the pill and that was it. I wasn't even offered a follow up appointment of told what stage or severity I have it. I was pretty confused about it all too but to be quite honest my surgeon never seen interested from the start so I just left it at that and took the pill and got on with it. Yes I'm still in pain I'm not quite sure the pill does a lot for me yes it stop my bleeding and ovulation but I still get the pain. If your not happy def go back and ask for a follow up app I was very depressed after finding out I had endo and I should have gone back and asked more question but I felt I coped better with my endo not knowing and feel that now I have a diagnosis I find it a lot harder to deal with which I know it sounds strange lol def go back if your not happy as it's not right not to have a follow up app I don't think x

[Rhiann in reply to LouiseABarnard94]

I would have expected that I'd have a follow up! I thought it was standard procedure. On the report it says 'No follow up appointment required' and 'discharged from consultant care' which seems pretty clear to me that I've been dropped and left to deal with the stupid GP. Honestly, my GP told me that going on the pill will 'get rid of my endo'. What? Even I know that it will stop the growth, but it's not going to get rid of what is there.

I just feel a bit embarrassed to start trying to contact the consultant or her PA. I feel like because it's only stage 2 they think I should just be able to cope and get on with my life, regardless of the fact that I am still in pain every day and I cannot go to the toilet without the assistance of drugs or the dreaded enema :/ I know that the pain doesn't reflect the extent of the endo, but I feel like they are not interested because it's not severe. Maybe it's just cause I'm in pain and feeling a bit unhappy with what has happened that I'm thinking this... I just don't know what to do. I think I will just try the pill and all of the laxatives I have been given for a few months, then kick off if things do not get better.

Thank you for your response, it's good to know what to expect from the pill. They want me to take it back to back for three months, then have a break and do it again so I will only have four periods a year.

Thanks again,

Rhi

[LouiseABarnard94 in reply to Rhiann]

Never feel silly. Your health comes first and your not better. I felt like this at first like never wanted to go to GP because I didn't have a stage so thought well it can't be bad then one day I just had enough and thought no they have a job, they have a right to care like I have a right to care for me. These people shouldn't be Gyne if they are prepared to care for you.

I did the 3 month then a break. If it's to much don't out yourself through it! And sadly stress doesn't help I'm the worst I stress and worry about everything it's horrid

I'm here if you need anything.

Keep going thinking of you

Louise x

[Hinesm]

Hello lovely, I'm so glad you got your diagnosis and all went well. You sound in the exact same position as me! If you look at my last post I felt it was all a bit half hearted, you've got endo now be on your way with the coil! X I called the hospital to see why they didn't attempt to remove any of the endo found (all the same places as yours bar the ovary) and they said I didn't consent to that. They literally just had a quick look around with a camera, did a hysteroscopy and put the coil in. It's so confusing and leaves u with lots of mixed emotions! X I get the sciatica pain you mentioned, I think that's from the endo in the Pouch of Douglas xx it's awful! Big hugs to you and I wish you a speedy recovery! I've got to wait 4 weeks for the follow up apt

(you'll prob get a letter in the post) If not Hun ring them an make sure you can go in and have your questions answered! Xx you're not alone though I feel exactly the same! Happy to have a diagnosis but more confused that before! X. X

[Rhiann in reply to Hinesm]

Hi

I've read your last post and I see what you mean, it's a very similar situation. The coil wasn't even mentioned to me once! And I definitely did consent to any procedure required while they were in there, they just decided not to bother (with no explanation why!). Ah, I didn't realise sciatica can be the result of endo in the POD. That makes more sense and makes me less worried.

I really don't think I will have a follow up. My report says I've been 'discharged from consultant care' and 'No follow up appointment required'. Very confused and annoyed... I literally know nothing about this apart from the very brief report of about 20 words! I just don't want to harass the consultant or whatever... I might contact them soon. At the minute I am just a bit reeling...

It's a shame that you are as confused as me, but it's nice to know that I am not the only one in this predicament... I am happy to have my diagnosis, but thought there would be a bit more than 'yes, you have endo. On to the pill with you!'. Best of luck anyway with your follow up. I just don't know what to do because my GP seems to know absolutely nothing...

Rhi xxxx

[Hinesm in reply to Rhiann]

It's so annoying isn't it! And being tired, sore and run down on top of it makes it all seem a bit worse, you don't know whether to be happy you have a diagnosis or angry at the vague and rushed diagnosis and lack of treatment which is what we sought in the first place!. I'm going to give the coil a go, and if that fails I'm going to ask my GP to refer me to the Manchester specialist clinic to have it all lazered/cut out. I was under liverpool womens hospital as well which is meant to be a really good gyne hospital. I really hope the pill works for you! I've got everything crossed for you. I couldn't take the pill due to migraines which is why I've had the coil put in - praying with everything that it helps as I don't fancy more surgery! X x

[Emma-louise]

Hi Rhi, glad to hear your lap went well, and that you've finally been diagnosed!

I had mild endo and mine was dealt with there and then. I was then discharged (no follow up at all) other than me going back to see my GP to get put on the pill. Ive been prescribed another POP pill (the ones you take every day with no break) and I've found it hasn't helped. The pain is definitely decreased when I'm actually on my period, but I've found i just have a lot of brown discharge and a dull ache almost everyday.

I am surprised they didnt blast your endo off whilst they were there, so it may be worth emailing your consultants receptionist or seeing if they can advise as to why this is.

I hope you get it all figured out though and wish you a speedy recovery!!

Emma

xxx

[Rhiann in reply to Emma-louise]

I really expected that they would have gotten rid of what they could while they were in there! I thought it was just standard... I'm really worried about the pill not helping me with the daily stuff. In fact, the first day/first 2 days of my period are awful, but I actually get some relief from my symptoms for the rest of it. My consultant was very good at her job based on other people's reports and her reputation, but she is not the most conversational of people and very blunt and aloof. I just don't want to hassle her if it will only make me angry. I might see how it goes for now, with the pill and everything, then get into contact if I don't feel better. I just wanted to know if this was normal.

Thank you for your wishes of a speedy recovery. It hurts quite a bit, but knowing what is going on (a bit, anyway) has made me feel a lot better.

Rhi xxx

[Emma-louise in reply to Rhiann]

Yer I'm really surprised that you didnt have it dealt with while you were under, it seems silly because if they want to treat it your going to have to go under again, which isn't just a small op!!

Ive just noticed a comment below that your from Warwickshire, same for me too! I went to Warwick to have my operation done, and my consultant was really nice.

It will hurt for a few more days, but luckily they give you some good painkillers

Hope your feeling better today

Emma Xx

[Rhiann in reply to Emma-louise]

Ah, I imagine Warwick hospital is better than George Eliot in Nuneaton! And they didn't give me any pain killers! I'd have thought they would, but ive had to rely on over-the-counter stuff which hasn't touched it

I can't believe they didn't give me any if they usually do! I have found it really painful.

Rhi

Xx

[Emma-louise in reply to Rhiann]

Yer Warwick is good, i was advised by my GP to go to Banbury though.

Didn't they?! I had Oramorph to take home, along with paracetamol and ibuprofen. No wonder your in pain!! See if you can get into the doctors tomorrow and get something to take the edge off it such as a better strength Codeine or something!

Emma xxx

[soph86]

Hiya,I had a 7 hour op about 4 months ago to remove endo and had o have part of my bowel removed as the endo had penetrated my bowel.i have been in unbearable pain for the last few years and took a long time for anyone to take notice.since my op I am still getting unbearable pain every day.my consultant had also suggested the pill,(I'm off to the docs today actually) at this point I'm willing to try anything to help pain as tramadol is my best friend at the moment and the other alternative is to have another op which I dont want unless I have too,I suggest to try the pill to see if it eases the symtoms,if it doesn't work you can see the gyne again and tell them it hadn't worked therefore they will need to take the next step,hope this helps xx

[Rhiann in reply to soph86]

Thank you for your response, I think that is what I'm going to do. I feel like I shouldn't be complaining when I got my lap so quickly (it was moved forward due to my serious bowel problems) and until I know that the pill isn't helping. I'm sorry that you have been having so much pain, having endo actually in the bowel sounds excruciating. I wish you the best of luck.

xxx

[Yazza]

What area do you live in?

I would say that the consultant is obviously not confident in treating endo so really if this is the case he has done you a favour because if he had treated it but not properly you would be worse off!

I would go back to your gp and ask for a referal to your nearest endo centre you can find this on the bsge website as there will be a team of people equipped to deal with this and that includes pain management

It is not except able to diagnose you then send you on your merry (or not so merry way) also you need to be careful as some pills may aggravate your symtoms.

Check out endopedia as it has an amazing amount of information also endometropolis on Facebook is brilliant 2 as there are specialist that can advise you 2. Xx

Good luck and don't be fobbed off. X

[Rhiann in reply to Yazza]

I live in a village in Warwickshire, and the Nuneaton hospital is my closest (though I was at uni before I got too ill, so I'm also registered in Cambridge). My consultant is an endo specialist! I don't understand why they didn't remove anything... It sounds ridiculous but I feel like I'm being a massive burden, and my GP is so awful (he literally doesn't seem to know anything about endo, and since January has been trying to tell me that there is nothing wrong with me, its just normal women's trouble, or that it's PCOS (which was the first thing I was checked out for, and have none of the symptoms of). I don't think he would refer me if I asked! I went to see him yesterday (straight after my lap to get the pill so I could start asap) and he said I need to be patient, and he doesn't want me to complain about the pill until I've been taking it for 3-6 months! I can't physically work with the way I have been, and I can't be at uni, but I need to do something. It's too much to expect my mum to put up with me living at home without any income :/

Sorry, that turned into a massive rant! Thank you for your suggestions, I'm going to go check out endopedia and the facebook group.

Thanks again,

Rhi xxx

[Maccbird]

I'm surprised by how most of you have been treated when you have been diagnosed with endo. When I was referred by my GP I visited the consultant gyne and I explained my problem & he was sure I had endo. He also recommended that I have the mirena coil fitted at the same time as the lap. I had the lap 2 days ago. Ok I'm sore and recovering slowly but when my surgical team came to see me post op they advised that the endo had attached to my bowel and are referring me to the endometriosis clinic in Manchester which specialises in more complex cases of endo and gyne problems. Before the procedure at my pre op assessment I was able to state my case for wanting the lap done. I wasn't mad keen on the idea of the mirena coil as I know someone who still bled heavily whilst on it. I was assured that if I wasn't happy it is easy to remove at my GPs, at that point I said yes I will try it. It's still early days but at this moment I feel relieved that after all these years I've finally been listened too and actions have now been put into place that will give me a better quality of life on a monthly basis. I hope you get sorted soon. Find your voice, don't be afraid to stand up for yourself. The one thing or the biggest single complaint we face with endo is that we're not being heard and we should just get on with it, well no & balls to that! This is a serious condition and most of us have carrying & suffering with this pain for 10 years or more. Please don't give up, ask or even beg to be referred. Good luck.

Loretta xx

[Rhiann in reply to Maccbird]

I'm pretty surprised by this to be honest! The mirena hasn't even been mentioned to me... Literally everything I know about endo has been from google or talking to you lovely people. I basically looked up all of my symptoms, paid to see a specialist who said they think it might be endo (but no more info than that), had a lap and been allowed to have a copy of the report. I have had no explanation of my symptoms, whether I will need another lap. All I know is I have stage 2 endo, and I need to go on the pill.

I am glad that this isn't the situation for everyone, and it's great that you are being referred to a specialist centre. I guess it's because it sounds like yours is a more complicated and developed case than mine... I don't know. I know I need to stand up for myself, but at the moment I just feel too crappy to be majorly kicking off and asking for more info. I might get my fight back once I recover from the lap (it hasn't been 24 hours yet haha).

I wish you a speedy recovery, and the best of luck with getting yourself sorted.

xxx

[Hinesm in reply to Maccbird]

R I'm so glad you got answers Loretta at least were all on the road to recovery now! And it's great that they've taken you seriously and referred you to a specialist! Xx wishing you a speedy recovery! X

[hannahhibble]

Hi I have suffered with stage 3-4 endometriosis and when I was first diagnosed I went on the pill it did help to some extent but I asked for a second opinion, as my symptoms weren't getting better they then prescribed me zoledex injections which really made a difference, so I would say try the pill but also don't be afraid of asking your GP why didn't they remove anything if the pill doesn't have a benefit on your pain ask your GP about the injections, hannah xx

[Maccbird]

Thanks everybody I hope we all get our problems resolved soon xx

[Yazza]

It is your right to chose who you want to see you can tell them although they will try and fob you off!

You can also see if there is another surgery in your area and register there with a hopefully more understanding gp. X

What was the name of your consultant? X

[BibaBee]

Definitely push it love!!!!! I have suffered from sciatic pain down my left leg for a good three years and since having my cyst removed and endo lasered I have been pain free.

I did not know I had it until the did a lap to remove my cyst and at the same time they blitzed the endo rather than putting me through another op.

You need to feel reassured! This is your health. Call up and schedule in a follow up and take a list of questions so you don't forget anything.

Good luck xxx

[Mabes]

Something I've found works fairly well is sending a written letter to the consultant - or I guess you could email, but I only had an address and also I feel a letter leaves more time for them to consider/respond. Anyway, you could write one from the angle of wishing to clarify that the endometriosis found during the laparoscopy was not lasered away, and if so why not.

Regarding your GP - can you try a different one? I found the male one I saw was hopeless and ill informed and the female one was far better. My consultant so far is like yours... Aloof and hard to communicate with.... Sort of unenthusiastic and doesn't exactly make me feel at ease. However, he did read my letter and respond - that communication was easier than in person!

[Hope264]

Hi, I have lived with diagnosed endometriosis for 5 plus years. The symptoms you have - leg numbness and back pain sound like something else I live with - back injury with a compressed nerve. I would push for an MRI. Numbness in legs and bowel issues can also be signs of nerve compression in spine from disc issues. I live with both- they interact. Good luck and I hope you can have a resolution soon. I have had luck with birth control pill 'qlaira' , pain management drugs, heat packs, tens machine and having a good local doctor to advocate for me also paying for my own scans when needed helped with diagnosis of the nerve compression causing leg weakness.