ANY ENDO ADVICE/HELP/HINTSOR TIPS GREATLY APPRECIATED FROM A VERY CONCERNED MUM

I am appealing for any help with the pain of endo. My daughter Chelsea has just turned 23 and has been suffering with this since she was 15 , she has had a laparoscopy and they say they had to remove a very lot of sticky stuff but it only lasted 6 months before the pain returned thick and fast . She has been been put through the change twice and has been giving so many internal and external scans to even count! Her consultant of 8 years believe her endo could now be behind the organs ie bowel which he is very reluctant to operate on due to risks piercing it. So operating would have to be very last resort. However we have just seen a different consultant who within 3 minutes of meeting her called her the wrong name and advised her you have 2 choices get pregnant or histerectomy , she obviously burst into tears as she's not used contraception and she just doesn't fall . They now want to put her through change again for 3rd time but we don't understand why if the 1st and 2nd time didn't work? SORRY for the long post but I'm desperate to try find some pain relief that actually works or maybe a solution from somebody who really understands YOU other endo sufferers. Amy advice big or small greatly appreciated thank you a very concerned Mother Michelle xx

17 Replies

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  • Hi, I am so sorry to hear about your daughter and also so sick of hearing stories about such antiquated advice from so-called specialists. Sadly it is all to a familiar story.

    The most important thing is to be seen by an endo specialist at an accredited endo centre. Sadly most general gynaecologists are quite simply not skilled enough to deal with the complexities of endo.

    As such accredited endo centres were established nationwide and if endo is suspected or formally diagnosed then patients have the right to request a referral to any of the accredited endo centres. Sadly many GP's aren't even aware of these centres! My GP wasn't until recently when I printed off the list from the website and gave it to them! You can find a list of the centres at the following website and by clicking on the tab labelled endometriosis centres:

    bsge.org.uk

    Most are NHS however some are private only so unless your daughter has health insurance or the funds to pay then ensure she chooses an NHS one. You can either call up the centre direct to confirm or contact the BSGE on the number of their website and they will tell you.

    The next important thing to do is a lot of research to educate and arm yourself against antiquated and inaccurate advice! Unfortunately all too often sufferers tend to know more about this horrible disease then their GP's and some so-called specialists! Hysterectomy is not considered a cure for endometriosis and there is a lot of research that supports this! Pregnancy may, but doesn't always, eradicate or reduce symptoms whilst pregnant but often symptoms return after pregnancy.

    Whilst unfortunately a cure does not exist at this point in time, the gold standard of treatment is good excision surgery (ie cutting out the endo) by a skilled endo specialist and sometimes a team of specialists that can be found at each accredited endo centre. These centres have colorectal surgeons, urologists & pain management specialists also to call upon when needed.

    I hope this helps and I wish you both the best for the future.

  • There's also benefit in trying to make diet changes, if you Google 'endometriosis diet' you will find some info about changes to make which could help. I've just been diagnosed with severe endo and i'm making the duet changes to give myself a feeling of making a positive change/changing what I can do something about. I think it can help with the emotional battle. I'm yet to discover if the diet helps me physically but I don't think it can hurt to try.

  • Thank you for replying janine. So sorry to hear about your severe endo -it breaks my heart to watch my daughter go through this pain daily so I really feel for all you other endo sufferers - many thanks for your advice on endo diet I will go look it up an give to Chelsea. I am hoping in time she may come on this site but at present she is still too scared to even read up about it even after all these years as says she looked it up once on Google and it can back about cancer so never ever read up on it since. I wish you a pain free day and I best get ready for work thanking you Michelle x

  • You are very welcome. Your daughter is very lucky, which may seem a strange thing to say in the circumstances, but to have a mum like you (I am lucky too) is such a blessing x

  • Thank you so so much for replying confused and worried especially fit the information you have given. We did not know there was such endo centres but after looking at the list our local hospital is 1 of them and Chelseas 1st consultant of 8 yrs is on that list however the 2nd is not so really do want to look in to pain relief that works. She has to go back to the hospital in 2 weeks and it has already been suggested that her options are really to go through the change again but this time for a year and with hrt - do you possibly know as to what damage this does to your ferocity? Once again many thanks for replying Michelle x

  • Hi Michelle, I think it's important that Chelsea asks to be referred back to one of the accredited centres.

    Can I ask when she had her laparoscopy was it diagnostic only or did they also remove endo? If they did remove endo did they excise (cut it out) or burn it?

    The reason why I ask is that some surgeons still use a laser to burn the endo (a laser can also be used for cutting though for reference). Burning the endo is not considered as effective as cutting it out as in effect it is only removing the top and not removing it from the root meaning it is more likely to grow back - much like a weed. Unfortunately I have read comments on this very forum that has led me to believe that some of the endo centres still rely on burning the endo as opposed to excising it. It is easier to do as it requires less skill. Therefore it is important to check with the surgeon how he removes endo.

    Endo is a very complex disease, much more complex than it is given credit for. Each treatment option carries it own pros and cons.

    With regards to hormonal based treatments that in effect put a women's body into a temporary menopause (Gonadotrophin-releasing hormone analogues such as Zoladex) the side effects for some can be unpleasant (they were for me!) and women should not really be placed on these for any longer than 6 months as it can have detrimental effects on bone density. Low doses of HRT may counteract the unpleasant side effects experienced by some but HRT (as with all medications) is not without some risks and ultimately as endo is widely believed to be oestrogen driven can in effect feed the Endo. Furthermore such treatment tends to merely dampen down the symptoms and the symptoms return after treatment is ceased because the endo is still there - it hasn't been removed.

    With regards to surgery excision is considered the gold standard. As mentioned earlier it is important to ask the surgeon how he will remove the endo. Also it's important women ask questions, even interview the surgeon! Ultimately you are placing a lot of trust in the surgeon and paying his/her salary so you have the right to do so.

    The other thing to bear in mind is that understandably surgeons can be reluctant to operate on someone still quite young because surgery carries risk. Perhaps the biggest concern is that the more surgery a woman has the more chance there is of scar tissue and adhesions forming which in themselves cause pain. That's why it important to reduce the number of surgeries a woman suffering from endo has in their lifetime by ensuring you find the best excision surgeon available to you and looking after yourself the best you can.

    Janine33 mentioned the endo diet and I concur with her that this, combined with a daily exercise routine and reducing stress levels where possible can make a difference. It has in the past reduced my symptoms greatly and held the worst at bay for about 5 years. Unfortunately my regime went to pot for about a year whilst I was project managing our self-build and working 7 days a week, 14+ hours per day and eating whatever I had time to eat which really took its toll on my health. I am now 4 wks post op from major excision surgery and a hysterectomy (the hysterectomy was for adenomyosis only NOT endo) and plan on sticking to the diet and resuming my excercise regime as soon as physically possible.

    And finally I understand Chelsea may not want to research endo or participate on these forums herself at the moment. I was first diagnosed when I was around your daughters age now. I'm now 39. When I was first diagnosed I found others' stories both distressing and depressing and to begin with the more I learnt about this horrid disease the more hopeless and helpless I felt.

    However, a few years later I finally came to realise that it was necessary to educate myself about endo because I too was being told there is nothing else we can do except offer a hysterectomy or strong painkillers like Tramadol. This was at the age of 32 and after having 4 surgeries and trying all the pills and hormone treatments they threw at me, often with little information about what they were doing to me.

    It was then that I dug deep to find my inner strength and resolved myself to being an active participant in my treatment plan and I would encourage all endo sufferers to do the same. Your daughter undoubtedly has the strength to do so. I think most women with severe endo symptoms do otherwise they just wouldn't survive and endure all that they have to. Taking control of your own treatment plan can be both liberating and empowering. Your daughter is lucky to have your support and with it she too will find the strength to manage her endo.

    I hope this helps and please feel free to ask any questions. I wish you both the best, Jo

  • Hi jo,

    many thanks for helping us we really do appreciate :-)

    I believe after reading the accredited list that we are already at 1. Portsmouth Queen Alexander hospital.

    Chelsea had her lap approx 3-4 years ago with her 1st consultant Dr Guyer. They removed quite a lot of sticky stuff he said. I didn't realise that there was excise or burn to remove endo so will definately check with Chelsea when she's home. She had it done under day surgery pretty much in and straight out after being in recovery for a very short while.

    Chelsea has been on zoladex for 6 months along with a contraceptive pill to take too but sadly got no relief from that, she then had a few months of not being on it then they put her on prostap next time for 5 months with nothing more than co codamol which again didnt help. Now after a few months of being off that the New Consultant wants to put her back on prostap but this time for 1 year and along with Hrt.

    I hope you start to make a full speedy pain free recovery jo X

    I didn't realise how many women suffer with this awful disease.

    once again many thanks for everybody's replies Michelle x

  • Hi Michelle, you're welcome for the advice/support. We women have to stick together!

    Just to confirm there are currently 2 named endo specialist gynaecologists based at the Queen Alexander Hospital. Am I right in assuming the new specialist Chelsea is seeing is the other named endo gynaecologist on the list and not just another general gynaecologist based at the hospital? If so, then given his suggestion of either pregnancy or hysterctomy as cures for endo Chelsea really needs to be referred elsewhere.

    Although not ideal sometimes travelling further afield to find the right specialist is worth it.

    In fact my surgeon is some 2.5hours away from where I live and even after almost 7 hours of surgery the journey home afterward wasn't

    that bad. So don't let distance deter you from finding the right specialist.

    Best wishes, Jo x

  • Hi - please can you click on my username and see my post on endo and its many symptoms and the one on how to find a specialist. I'm out today but will come back later to follow it through. x

  • i just want to say im so sorry for your daughter i really feel for her, i really hope she gets some help and quickly.

    sending hugs

    x

  • Thank you dk11 36 and lindie for replying, I am actually overwhelmed at all of your replies. Thank you each and every one of you for taking time out of your day to help my daughter and .i it truly is appreciated lindie i will read up on your posts this evening x

  • I agree with what others have said, make sure it's a specialist centre, however if you're not happy and willing to travel then ask to be referred to another specialist centre. The one I have been referred to is not the closest but they are very good for the surgery I am going to have. I have stuck to the endo diet and it has helped a lot with day to day pain. It can feel quite restrictive at first but once you realise the difference in how you feel, I tend to stick to it. Is there any support groups in your area? Even if your daughter didn't feel up to going, family members are welcomed too at the one I have been to. I also find exercise useful at times. I hope your daughter finds a consultant who is a bit more understanding than the one you describe. I understand how she feels, it can be scary to hear other people's stories and experiences if you are not at a stage where you are able to take that on board. good luck x

  • Hi again Michelle

    What concerns me is that the consultant of 8 years has said that he believes that the endo is now behind the organs and is reluctant to operate due to the perceived risks, and surgery would be the last resort. And then Chelsea was seen by someone else who clearly didn't really know who she was and was utterly insensitive in suggesting totally inappropriate remedies - pregnancy or hysterectomy. It is now absolutely established that neither of these is any sort of cure for endo and that the only treatment is thorough excision.

    In wishing to avoid surgery, can I ask if the consultant has done an MRI first to establish whether there is significant bowel involvement? If not then it is completely unprofessional to say that he believes something to be the case but not intend to follow through with appropriate investigations. The area behind the uterus/bowel area is a common site for endo and it should be excised in the same way as from anywhere else and it is for this sort of complex surgery that we have specialists. Following failure of medical treatment then surgery is the next treatment as supported by NHS protocol, so to want to avoid surgery without even establishing what would be involved is very poor care.

    It sounds to me as though you might be in a situation of being under one specialist too long so that they lose interest and that you need to seek a second opinion from someone fresh. This happens with GPs and patients.

    Can you let me know what Chelsea's symptoms are in as much detail as you can and can you private message me the name of the consultant she saw last who treated her so insensitively? x

  • Endo was burnt out

    This msg is from Chelsea which i have posted on her behalf...

    Thank your everyone for sharing your experiences,I have had lots of transvaginal scans but not an MRI. My pain changes from being really deep sharp shooting pains to constant aching to throbbing, sometimes it's pain around my ovaries and other times its really low down in my bits and then it's sometimes higher up x

  • Hi. Chelsea, ( and mum).

    I'm 39, stage 4, with bowel involvement, my problems started at around age 14. My journey to take control of my own health only really started 4 years ago when I realised drs where just not educated enough to help me. A great book by henrietta norton, about diet and lifestyle with endo (a nutritionist who also can be found at a website wildnutrition.com) got me started. Also Dian shepperson mills can be googled. With good quality ( endo specific)nutrition and avoiding key foods, within a month things felt better for me - and I could then summon the strength to keep fighting / learning and be positive. I wish I had known all this sooner so I could start treading the right path, drugs can deplete / unbalance all your natural reserves of hormone, and minerals and b vitamins are critical.

    I have a daughter now so the value of what I have learnt so far has doubled, and I'm keen to share it with her and anyone else who it may help too.

    I agree with what the previous ladies have said, knowledge will get you through, stay positive, you aren't alone. X

    Keeping a diary if you don't already, helps keep you sane and track your symptoms and work out what might be a trigger to avoid.

    Google "cemig" (ashford & St. Peter's specialist endo centre) - useful website, with a reading list and a Template diary which may help find what works for you.

    Trust your instincts, and go with what feels right for you, providing you are in tune with your own body. Nobody else can 'tune in' for you unfortunately, you're unique, and if you let them, you'll be settling for second best, like I did.

    Good luck!

    Nicky.

  • Thank you nicky. Chelsea has another hospital appt next Wednesday so we will see what they say this time. Unfortunately Chelsea is still not ready to come on these sites and absorb the knowledge that could help, so she is trusting me to get what we need. After a lot of reading of different posts (Thank you to each and every one of you ) I feel very strongly now that I do not want her going back on prostap especially with a year's worth of injection put into her along with Hrt as the consultant wants - so let's see how this goes down wish us luck and thank you to all x

  • Well today was the follow up appt back at Portsmouth QA Hospital.

    This msg has been posted here on behalf of my daughter Chelsea so any feedback greatly appreciated and welcomed.

    Hi everyone I walked in room and confirmed name and address he then asked I'd had my 1yrs worth of prostap injection yet, once I'd said no and that i didn't want the injections he then said that that's the only cure, we challenged to say that prostap is not a cure it just makes it dormant it doesn't cure it, he then said well thats all a laparoscopy would do, we told him that we'd read the best method to remove it is to excise it but he didn't even acknowledge it and that's when he asked if I knew if I'd had Endometriosis, we said about the Internet and what information we found he disputed the BGSE accredited centres, and he said you shouldn't believe everything you read in the Internet, he's done as many surgeries as Dr Guyer, the only difference is that he hadn't paid the £700 fee too be on a accredited list like Dr Guyer and Dr Tsepov. He said he is a specialist, there is no different between him and Dr Tsepov they both use Diathermy whereas Dr Guyer uses laser. He then checked the ultrasound scan results which were all normal, but he said you don't even know if you have endometriosis yet do you, i said yes i have got it and that I'd already had a laparoscopy. I told him that Dr Guyer had lasered everything he could see during my laparoscopy in 2012 but he suspected that there may still be Endometriosis behind my organs, which Dr Saloum then said well then we won't be able to get it even if we were to do another laparascopy. He said there are complication effects as in 1 in every 200 which results in changing your life forever having that surgery. When we asked as to why we were referred to him after being with Dr Guyer for 8 years, he just said that that's the way the NHS works and that if I wanted to see the same person every time then I should go private. I asked if I could be referred to the pain clinic as my pain killers aren't strong enough but he said no as the pain clinic don't treat endometriosis patients as the only treatment for endo is the prostap, he then said he will refer me back to Dr Guyer and that all the time I'm waiting to be seen again by Dr Guyer there is nothing the pain clinic can do but I should try to get an appointment at my GP to see if I could get stronger painkillers prescribed.. so really feeling that was yet another wasted time today and still no nearer in helping this pain go away. Xx