To lap or not to lap?

[moodee]

Hello, I am new to the forum but old to the world of Endo.

(GO TO THE END FOR A MORE CONCISE VERSION)

Here's a brief history of my case. I started with 'obvious' signs of Endo 13 years ago. After a battling 5 years I was finally given a laparoscopy and was diagnosed with Endometriosis. By that time I was in absolute agony (despite living on strong pain killers) and had developed moderate Chronic Fatigue Syndrome (though that wasn't diagnosed until 2 years later). The initial lap showed that my Endo was low down in my pelvis, predominantly on my right side including my right ovary. It wasn't 'extensive' but because of its location it caused a lot (!!) of pain. What followed was 7 months of Prostap (pseudo menopause injections) with HRT and tricycling the contraceptive pill. Unfortunately these did little to help me, and I ended up having another lap and excision surgery, and the blue dye thing through my tubes (sorry, I forget the term). I feel that the surgery was not a success (my Surgeon disagreed) and I awoke in the recovery room in agony. My gynae felt that the only options for me were Prostap again, Oophorectomy (ovary removal) or pregnancy (whilst my fertility organs appeared to be ok). The only viable option was to try and have children. Thankfully, I went on to have two healthy children in quick succession. My youngest is now nearly 3 years old and my Endo is starting to affect my life once again. It's not quite as bad as it used to be, however my life is different these days (I no longer 'work' on my feet in a stressful job etc.) but I do have to take Co-codamol everyday to manage the pain. I used to break down crying all the time and was very depressed because of it all, as well as exhausted and all that Chronic Fatigue Syndrome brings. I do not want to get to that point again. I feel like crying just thinking about it.

So, my current situation... For the past year I have been going to my GP with pain in the left side of my abdomen and a lump. An ultrasound showed nothing. When the pain intensified I returned and was passed onto a Bowel Specialist. He examined me and said that the lump was normal (poo passing through the sigmoid colon). Nonetheless he performed a colonoscopy to check for any disease within the colon due to the pains. I went for the results on Tuesday and the biopsies were fine. Beforehand I had already decided in my own mind that due to my 'old' Endo pains returning low in my groin (sharp pain, pulsating pain, shooting pains etc.) that the pains in my left side (approximately belly button height) may also be Endo (due to similarities to the old pains). Anyhow, the Bowel Surgeon questioned about the incidence of pain etc. and he also thinks it is Endo. As such, he has offered to perform a laparoscopy and burn off any Endo deposits that he finds.

Prior to my appointment I was expecting either something untoward to be found in my bowel or to be discharged. The Surgeon has completely knocked me back by suggesting that he himself do a lap and burn any Endo off. I told him that I need to seriously think about it. These are my main reservations...

1. I'm not sure I want to go through the whole process again. I don't feel that my last laparoscopy (6 years ago) achieved much and, due to CFS, I was fatigued for 3+ months afterwards. I had the colonoscopy a month ago and that has made me very low energy. I'm not sure how well I'd cope after another bout of invasive surgery. Plus, what if it's in my head? (I don't think it will be, but I feel like I'm back to pre-diagnosis in some ways).

2. Should a bowel surgeon be removing Endo without the presence of Gynae? I have done lots of research on him, turns out he is a renowned surgeon, and he said there would be a Gynaecologist in a nearby room to check things over with (though not be present throughout).

3. Because my pain isn't as bad as it used to be, should I just hold back for now... perhaps it won't get that bad this time? (Though maybe I'm just hoping it won't). What if they operate and don't find much - I feel like I may be wasting their time.

4. Should I discharge and go back to Gynae? My husband thinks that if I’m going to be operated on then I should go the whole hog and have my ovaries removed. Ovary removal is not high on my to do list. Maybe I should consider it though?

5. Should I just 'shut up and put up'? My pain is bearable a lot of the time. I do have to take Co-codamol everyday and often have a hot water bottle... maybe I should just plod on until the actual menopause? I'm 35, my Mum went through it in her mid-late thirties, maybe I won't have long to wait?

6. Should I try to have another baby? (apologies for making it sound so trivial, I know many Endo ladies suffer with infertility and I really don't mean to cause any offence). The Bowel Specialist did suggest it at my first appointment with him. Pregnancy never 'cured' my Endo, but it certainly helped to lessen the symptoms. Some huge doubts to this are that firstly, I may not be as fertile now (if the Endo has indeed spread); a child is not an easy decision - they're very hard work (though a blessing too); my husband and I are not in the best place at the moment - more friends; we are unsettled in accommodation (renting) and work (my hubby may be losing his job soon).

Apologies again for my rambling thoughts. I guess, to be concise, what I want thoughts on is:-

Do I let the Bowel Specialist perform the lap and burn out Endo (knowing that he won't be touching the Endo low in my groin, just on my Bowel; knowing that I will have a hard recovery with the CFS).

Do I discharge and get transferred back to Gynae and have something more 'final' done (e.g. oophorectomy)?

Do I 'shut up and put up' with it all? Perhaps I'll be menopausal soon anyway.

Do I try for another baby, which should help to subside symptoms?

Any thoughts or comments will be much appreciated. I don’t feel like I have anybody in my real life to talk this through with (I’m not close to my family and I lost a lot of friends when I was depressed). Thank you for reading,

D x

[lillyflower]

Hi, when I first read your text I thought why is gyni not involved but if he's a top surgeon and there's a gyni available he must feel confident he can help you or he would have sent you back to gyni!

I've got a fertility specialist doing my op as the gyni was just wanting me to take pill and painkillers and was no help. Although I know they're both to do with gyni he is confident it will reduce my pain and for that reason I've agreed to a laparotomy with at least 6 week recovary. So I understand how you must feel about having a long recovary but if there's hope of feeling better in the long run isn't it worth a try?

I wouldn't ignore it as can get worse which is why I don't just want to be left with painkillers, mainly codeine too at the moment!

As far as children go, I'm glad you haven't had any issue getting pregnant, I can't have kids naturally ,and no I didn't take any offence, but I hope to have ivf. My big worry is how would I cope if pains get worse and have a new baby too, so I'm hoping to reduce pain and then concider ivf which if it works will keep me feeling better too hopefully. I think if your husband hasn't got a secure job a baby on top of all this is a lot of possible stress, and stress can make endo symptoms worse.

So these are just my thoughts, and I'm not sure if it really helps but all I can compare is that I've been offered an op which is going to be a big recovery time and being self employed is a huge knightmare, but I'm focusing on the hope of pain relief and just praying it will all be worth it but unfortunately nothing is certain so you have to do what feels right for you. Sorry I can't be more helpful x

[moodee]

Hi Lillyflower, thank you for replying. Your comments are most certainly helpful. I've done a bit more reading up online, and it seems to be normal for Bowel Surgeons to remove Endo from the bowel area whilst the Gynae concentrates on the reproductive organ areas - though the Bowel Surgeon and Gynae would, normally, be in theatre together at the same time. Like you say about your Fertility Specialist, I guess it just boils done to their own experience and confidence in doing the operations. I think that perhaps I need to get some thoughts and questions down (in a less waffly way!) and speak to my Dr. Oh, he did suggest going back to Gynae if I wasn't sure about the Lap right now, but that would be a much longer process (back to GP, then transferred to Gynae to see what and if they would do anything...). I think the things that are really worrying me about the Lap are - what if it doesn't help, and then the amount of time it'll take me to recover. I suppose that at least I know that it'd be a long recovery and to take it easy. I guess I need to weigh up things in the long run. All the painkillers I take can't be good for my body either

I'm sorry to hear about your situation. Hopefully they'll be giving you a good clear out, with the laparotomy there should have great access to your pelvic area and your Endo lesions, adhesions etc. Good luck with your operation, recovery and IVF (should you start it). Like you say, it's best to try to stay positive. It can be a long and horrid journey but hopefully everything will work out in the end. Thanks again. x

[lillyflower]

Hi, I'm glad your doing a bit of research, maybe you could ask the doctor if the gyni could be present too? My theory is that I have pain everyday and if this big op may relieve some of it I'm happy to take that chance. He can't guarantee it but is quite hopefull so although it's a long recovery I'm focoused on that ! I am supposed to have another gyni appointment but my last one was rubbish and I was just left to deal with pain so my concern for you would be if you go back to gyni that's more waiting and hoping that they will agree to operate. I suppose the choice is to try a lap soon or possibly wait months to get to the same point? I wonder if you can agree on the condition that the gyni surgeon would be involved too due to you knowing it will be a long recovery you don't want to find you need a second op later if it can all be done together. I hope you can speak to the doctor and they help you decide what's best. Like I say I can only go by what I would do in your situation and I know I need my pain reduced asap as seems to be getting worse every month, so I'm just happy they're going to try and help. Fingers crossed we both get some relief soon x

[Juleyanne]

Reading your story rang a lot of bells with me. Our situation sounds very similar, except that I did not have children. My tubes were damaged and removed because of endo many years ago. Lucky I am not maternal. I am now menopausal and still have ovaries and everything else but tubes. I get awful pinching right sided. Previously, they found endo and adhesions had stuck my ovary to my bowel and tube stump the other side had adhered too. I am trying to get the inner strength to see an endo specialist gyne which may well lead to more surgery. Might be hysterectomy and I feel my bowel is restuck as can't bear tight waistbands and get pinching right sided when I sit, eat, when my bowel is even slightly full or bladder, low back pain and now hip pain. I do have diverculitis and arthritis starting in my hips. I get so so exhausted all the time, live on Co Drydamol similar to Co Codamol and take Fybogel and Merbervine and Colpermin and occasionally strong Ibuprofen and sleep pill to get any sleep as pain wakes me every day early. I really think I am chronically fatigued and wonder how you got diagnosed? I am expressed this intense tiredness to Gps but as yet it has not been suggested it might be chronic fatigue. I am scared to have more surgery in case of more adhesions. A talk I attended by a top gyne who specialised in endo adhesions indicated it is best to have radical excision and lose both ovaries to stand a chance of removing all endo and adhesions once you have either had a family or are menopausal. Apparently endo sufferers are at greater risk of ovarian cancer so losing ovaries reduces the risk.

Not quite sure about having a bowel surgeon alone doing the op, I guess that would concern me too. I would ask more questions about the surgeons success rate for similar surgery.

I wonder if the royal college of gynaecologists would consider this a standard approach or perhaps ring round the country and talk to endometriosis centres. All the best.

[moodee]

Hi lillyflower - that's my concern about gynae too. By the time I do get to see someone, they might not be willing to do anything anyway. I've been in a lot of pain these past few days (time of the month) so right now I'm feeling like just going for the op. My lap is booked for late September. I think if things can be arranged ok (such as my hubby being able to look after the kids post-op) then I'm going to go for it. The bowel surgeon appears to be one of the best in the country so that reassures me a little. I think I might try to contact him or his secretary beforehand though, to see if I can find out how much he'll look around my pelvic area for the Endo. I agree that the pain does get a lot worse so quickly! Again, thanks for your help and good luck with everything! x

Hi Juleyanne - in the year leading up to me finally being diagnosed with Endo, I was experiencing lots of health issues - light headedness, feeling faint, fatigue, exhaustion, cognitive difficulties - 'fuzzy head', aching joints, weak muscles, forgetfulness, no energy, out of breath easy etc. I had read that fatigue is common with Endo so I assumed it was just part of that. There was times that I was bed ridden because of it. It was because of the low energy after my second lap that made it such a long recovery process. Shortly after returning to work I was off sick again. So, having done lots of reading of symptoms on Google, I went to my GP and said that I wanted to see a specialist who deals in tiredness. I was transferred onto the Chronic Fatigue Service/M.E. Service in Leeds where I saw a lovely, non judgemental lady who listened to my symptoms and diagnosed me with CFS. I was passed on to an occupational therapist there and saw her regularly - she listened lots and that in itself helped so much (I find it difficult to get feelings out and having CFS made me feel lazy when in fact that's not really the case) and she gave me lots of help and advice in how to manage the condition - advice that I still utilise now, several years later. In order to be diagnosed, you have to have experienced extreme tiredness and symptoms for more than 6 months. I would suggest that you Google to see if there are any 'specialists' in your area and would definitely advise you to go back to your GP and be adamant about being passed on to someone. Because I get scatty I always write a list to take with me to the doctors - have you tried that so they know all of your symptoms? Also I recommend you make sure they know how much impact it is all having on your life - when it affects you more, what you're not able to do etc. You only get to see GP's for 10 minutes so you have to really try and emphasise how bad you are feeling. I'm sorry to hear that you're still signs of Endo despite being menopausal. I was hoping that may be the one thing that finally 'cures' it. I hope that the pain lessens/goes with time. Is there any hormone treatments that could help in the meantime? (Though I'm not sure what they'd use during the menopause, aside from HRT). A hysterectomy is certainly radical but I guess it is something for you to consider if it will make you feel better in the long run (though I appreciate it's not an easy decision to make). Maybe it's worth you being referred to an Endo specialist anyway, at least then you can talk through your concerns without actually having to go ahead with the op. It's such a horrid disease. Thank you for your help, I wish you the best of luck with everything - keep pushing for action with your GP. And if they don't do anything just keep going regularly (every week or two), they'll soon get sick of the sight of you Best wishes x