Hi all, I had surgery to investigate for endo in Sept and it was found mostly on my bladder and then on my uterus too front and back, surgeon told me he had removed it all and I am now been treated by method of contraceptive pill.
Problem is ever since the surgery I've been in some pain, I did suffer post op complications and was readmitted a week later which set me back but it's now nearly 6 months on and whilst the pain isn't as debilitating as it was prior to surgery it is now more frequent and still painful in different ways. I'm concerned it's either back? Or in fact never went, could the surgeon of missed some?
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Bambi26
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I had a large endometriosis cyst removed in the march and was re admitted in September, only because I pushed and pushed for it. My surgeon said that he would scan me as piece of mind but that he didn't expect to find anything....but there was a 9.5cm cyst on the same ovary! He was quite shocked that it come back so quick and certainly didn't expect it. If I was you I would be asking for a "piece of mind scan"! xxx
Ahh right ok! I think I will ask for a scan then, I guess we know our bodies better than anyone and I know this pain probably isn't what it should be post surgery, I hadn't expected to be completely rid of pain but not still suffering this much! Thank you x
I had severe adhesions, the first 2 periods after surgery were horrible, even more painful than before the op. But it started to get better and there was no pain in between periods. It all came back worse than ever 3 years after op.
If I were you I would ask for a second check, you should be better by now, but than endo is different for each of us... good luck!
Thank you for sharing, interesting to hear your first few periods after laps were that bad because that's what I'm experiencing currently, although mine is still painful inbetween periods too just more bearable than at a period!
I'm due to see him in a month think I will ask for another check
I've had four treatment laps and it varied for me - its hard to say how quickly the endo returned but I can say how quickly the pain returned. My first treatment lap which was done by a specialist, is been on Depo and had no periods for over a year and all he removed were adhesions and a couple of spots of endo. I felt great for about three months, then my periods restarted and the pain can't back.
Every lap I've had since has had less effect than the last - the last two, I've honestly had no improvement whatsoever. The last two were five years apart - I had decided not to have any more but the gynae convinced me that it might help.
I am someone who has mild endo but severe pain - so I suspect it doesn't take much for the endo to return to the point where the pain returns.
You may also have adhesions which are making things worse and they definitely can miss some.
If you're still in pain, I would try to get a referral to an endo specialist.
I'm the same, mild endo but severe pain. Sorry to hear you haven't had much success from the laps but it is nice to hear someone else has had similar issues!
Think my consultant currently thinks I'm imagining the pain as he doesn't think it is possible that it might of returned!
Yeah, sadly you may have to get used to that attitude - I've even had gynaes who seem to know what they're doing say "the amount of endo doesn't dictate the amount of pain... But you can't possibly be in that much pain from such little disease." The specialist said that to me after the first lap he did - I asked if being on the Depo and not having periods could have masked the severity, he said "not to that extent". He agreed to do another lap once my periods had returned 12 months later and my endo was mild by widespread. He was really surprised how much more disease was there - were you on the pill or anything when you had the lap?
He gave me a DVD of the second lap he did - at first I was confused as it all looked normal but when he started removing it I realised that there were what looked like tiny blisters everywhere. My endo was all either clear or yellow / orange - not at all the usual black or dark red presentation. This explained to me why it was missed at my first ever lap where I was only in theatre for five minutes and I only had one incision, in my belly button, which means they couldn't have used any instruments to move things around and look properly.
My most recent lap was done by a general local gynae - I told him my endo looked unusual and gave him my copy of the DVD. He said he would watch it. When I came round, he said there was only minimal endo there and he removed it all. My recovery was hideous and it didn't help at all - thing is, I have zero confidence that he actually found it all let alone got it all out. Maybe he did but there's no way to know. I decided after that I'm not having another one unless there's a very obvious reason I need it. Surgery just isn't right for some of us and I wish I hadn't had so many.
When I lived in London, I had a fab pain specialist who explained a lot to me. She said that she believed my pain was no longer caused by the endo but by nerve damage, caused by a combo of surgeries and many years of pain. She said my nerves were sending constant pain signals even when there's no stimulus, and when there is something, my pain levels are massively exaggerated. She put me on amitryptilene and pregabalin which are often prescribed for neuropathic pain. I'm still on the ami, can't take high doses because of my ME but it does help me sleep through at least.
Sorry you're having similar issues, I know how much it sucks xxx
Good question! The fact is that all women are different, and therefore all cases of Endo are different. Some women can have minimal Endo and lots of pain; others have lots of Endo and little pain. Still more women have other combinations.
I'd say it's more a case of being fully aware that Endo CAN return after a lap. Like you, I also have Endo. I find it somewhat of a nuisance, to say the very least! I had trouble with my periods as a teenager, but it was never really investigated or explained, and I was just advised to take the Pill to make my periods more regular. That just MASKS symptoms!
My symptoms became a LOT worse @ 2002 (I was 31). Heavy and painful periods, clots, flooding, upset stomach, chronic back and pelvic pain, nausea, bloating... things like that. Not very pleasant at all! After much to-ing and fro-ing (and some VERY unhelpful Doctors) I was finally given the confirmation of a diagnosis of Endo in 2011, following my first lap. I have since had 2 further laps, including laser ablation, and radical excision of Endo. I am due to have a fourth lap on 03/03/2014. Urgh!
My Endo is what the NHS classify as the most severe type. It was in my POD, my Utero Sacral Ligaments, and about my bladder and bowel. I understand that it was actually buried inside my ligaments, and is a type known as Deep Infiltrating Endometriosis. Rectovaginal Endo is also classed as sever, and this is Endo that is anywhere around the rectum or vagina (as the name suggests!) - this includes Utero Sacral Ligaments and bowel area (so you could say I have this, as well).
My Endo has recurred after surgery. Following my first lap, I had only a short period of a few weeks, before ending up in A&E on SEVERAL occasions with absolutely excruciating pain. I now understand that my first surgeon had not completely removed my Endo, and had left the bit in my ligaments (he'd missed it!). My second lap located this Endo. My third lap was to cut it out of my ligaments. Sadly, my pain has returned again, along with some of the other symptoms that I recognise as signs that my Endo is active (I reckon you get to know your own symptoms over time). Still, my last lap was in early 2012, so I've had nearly 2 years of reduced symptoms.
I think the best thing that you can do if you are concerned about your pain is discuss it with your Doctor. Make it clear that you are in pain - keep a diary of your symptoms and when they occur, and take this as evidence to your Doctor. It may help to show up patterns in your symptoms and illness
I'm going to send you another reply as well, that includes a list of things that I try to do to get my Endo under control. I don't know if it will help, but it's just some suggestions you could try. remember that you are not obliged to agree with anything I suggest - it is up to you to decide on the best course of treatment.
Here's the second reply I promised, for what it's worth. If you find something here that may help, feel free to use it. Otherwise, I'm sorry I can't help more, but do know that people are thinking of you...
Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!
By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!
For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:
1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.
2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists plus your area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.
3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!
4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.
5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings too, and see if these coincide with your periods, or whether it is perhaps medication that causes them.
6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!
7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. If you are studying, Universities and colleges often have Student Support departments where students with personal health problems can get advice and assistance (some even have Disability Advisers). Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?
8. If pain, and pain medication are problematic to you, you could ask your G.P. for a referral to a Pain Management Centre/Clinic. These services are usually multidisciplinary teams including Psychologists, Pharmacists, Occupational Therapists, Physiotherapists... and they are designed to meet the needs of people who suffer from long term pain.
9. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort can be a good natural aid to help with mood swings. Echinacea is useful to boost a flagging immune system.
Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.
I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.
Take care,
Elaine Ellis.
P.S. Just a few useful contacts:
1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.
2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.
Hi, thank you so much for both your messages...it's nice to have found this community and hear others stories. Thank you for the tips I've been thinking about trying the endo diet, so will look more at this. I'm particularly struggling with fatigue and bloating at the moment as well as the pain! So good to have some tips to try.
Thank you for your advice and support much appreciated for someone new to all this xx
Had my first lap in dex 30th and felt like a new woman until a few weeks ago and now I'm in awful pain. I fought my doctor for a year to get my lap and now I have to do it again. This time tho I've seen to lady gps at my surgery who have said it's definatly back or he didn't do a good job so I'm now waiting to talk to the surgeon about another operation. Xxx
I'm only 20 and have lost all friends because of this horrid illness and my family don't understand either. A lady I met had had a lap and endo removal 11 Times now and has a hole in her back because of it.
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