Recently diagnosed

Hi

I finally received my diagnosis on Monday following my first, and undoubtedly not my last laparoscopy. They found 2x chocolate cysts, deep endometriosis??, adenomyosis and multiple adhesions. My consultant surgeon's attitude was appalling. He told me what I had, told me I need the Mirena coil fitted and told me due to my high BMI he could not get to see deep enough into my lower pelvis. I told him I'd had the coil fitted before and couldn't cope with the side effects of that again. It mentally nearly destroyed me. He seemed really antagonistic to my response and said there's no alternative and I'd have to hope it doesn't get worse!! He went on to tell me I have nodules on my ureter that he has not touched, and on my bowels too, which he has left. He does not intend to see me for a follow up as he can do no more for me. Great!!! This has made me feel pretty rough for years, with excruciating pain shooting up my rectum which sometimes is that bad that I struggle standing/walking. Does anyone else have such symptoms? If so what do you do? I've had this quite bad since my surgery, in fact I'd even say worse than normal. It's getting me down. Are any of you ladies on the larger size and feel dismissed by the surgeon because of this? I'm at my wits end. Any response would be greatly appreciated. Thanks xx

9 Replies

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  • Hi sorry to hear (though sadly not surprised to hear) about the lack of service, empathy and understanding you have received from this so called professional.

    Can I ask whether you were seen by a general gynaecologist or an endo specialist? Seeing an endo specialist sadly doesn't necessarily mean you'll be on the receiving end of a better attitude but it is supposed to mean that the surgeon is more skilled to thoroughly excise the endo (ie cut it out) and call upon other specialist team members when necessary such as a colorectal surgeon, a urologist and pain management specialist.

    If it was not an endo specialist now you have been diagnosed with severe endo you have the right to demand a referral to any nationwide BSGE accredited endo centre - it does not have to be the closet one to you for reference. You can find an accredited centre at the following website and by clicking on the tab labelled "Endometriosis Centres" followed by "BSGE Accredited Centres":

    bsge.org.uk

    To be honest as it doesn't sound like your consultant is an endo specialist he has done you a favour not touching the endo. Removing endo can be very complex surgery and all to easy for someone without the necessary skills to get it wrong and cause more damage, problems and pain.

    With regards to your diagnosis of adenomyosis, can I ask how old you are and what other treatment options the consultant offered other than the mirena coil? There is a good website called the Adenomyosis Association and it might be worth you looking at the symptoms and treatment options.

    Unfortunately hysterectomy remains the only definitive cure for Adenomyosis at this point it time but there is a new technique for women who may still wish to conceive in the future using MR guided focused ultrasound that is showing some promising results although may not be readily available to many at this stage.

    Best wishes, Jo x

  • Hi Jo

    Thanks for your reply.

    Sadly the surgeon I had the pleasure of seeing is an Endo specialist. That's why I'm filled with angst. If he is like that do I have any hope?

    Thank you for sending me the link to the BSGE centres. I have just looked at it and am astounded that my surgeon is actually named on the list as being a consultant at one of the hospitals. I'm seeing my GP this week who has been brilliant throughout. He has been the only one to have listened to me over the years. He joined the practice around a year ago and has got everything moving for me, so fingers crossed he can help.

    Thanks again for the adenomyosis lead. I'll look into this this evening. I'm 40 years of age, and am lucky enough to have one son, who I conceived through fertility treatment. I don't wish for any further children, and am quite prepared to undergo a hysterectomy, but am apparently too young?? No other treatment options have been offered, and as he has decided he won't be seeing me for a follow up there won't be any opportunity for this topic to be discussed. I'm confident to research this field, but its vast, hence my joining the site hoping to gain an insight into others experiences, and to assist others with theirs.

    With best wishes

    Dian x

  • Hi Dian, Sorry (& worrying) to hear your surgeon was a BSGE Accredited specialist. It's such a shame this forum won't let people discuss individual centres as how can women then ensure they are receiving the best treatment available to them?!?

    I would consider trying another specialist, particularly as unaddressed endo can cause further problems. Not wishing to scare you but endo on the ureters if allowed to progress can impact on kidney functioning. Weight shouldn't be an issue I recently had surgery for endo including removing it from my ureters and I am overweight thanks to endo and Adeno impacting on my ability to excercise.

    I am 39 and 9 weeks ago underwent major excision surgery for endo and a total hysterectomy (ie uterus and cervix removed) for adeno. The surgery took almost 7 hours. My surgeon was adamant about preserving my ovaries due to health risks associated with early menopause. That being said research suggests even with ovary preservation ovaries tend to stop functioning within 3-5years after hysterectomy sadly.

    The daily sciatic pain, nausea, very heavy and irregular periods and constant need to urinate have gone now thankfully. I manage 5 hours consecutive sleep now whereas before I was lucky to get 2! So I am pleased with the results so far though it's early days in my recovery and I have a way to go yet.

    I know it's easier said then done but I would encourage you to find the right specialist for you and your circumstances, even if it means travelling further afield. In fact my surgeon is basd 2.5hours away and I was dreading the car journey home after 7 hours surgery. But I can honestly say it wasn't that bad. I would PM you the name of my surgeon however he is private only and I am fortunate to have insurance to cover most of it or else we couldn't have afforded it. However I know there are other good NHS centres out there so don't be put off by one bad egg.

    All the best, Jo x

  • Hi Jo

    Thanks for your reply. It's given me encouragement to know there are other viable options out there.

    You've certainly been through a lot with your confitions and subsequent surgery. I hope things continue to improve for you and you get back more of that precious quality of life we all yearn for.

    Take care. With best wishes, Dian x

  • Hi Dian,

    Thanks for your well wishes & I hope you get the treatment and support you need, best wishes x

  • Hi Dian

    You are not too young to have a hysterectomy but if this were done then it would be vital that all your endo was excised at the same time for two reasons. Endo can continue after menopause, whether natural or through surgery, and once the uterus is gone then endo that was behind it that was not removed has a direct path to the bladder and ureters. This happened in my case. Unfortunately the main source of oestrogen that feeds post menopausal endo is fat tissue. Oestrogen is mostly produced in the ovaries but it is also produced in other tissue (including endometriotic tissue) by direct conversion from cholesterol, the base molecule for oestrogen production. So for anyone, whether pre or post menopausal, it is important to try and keep the weight down to try and help control the endo. But there are kinder ways of telling people this. I lost 3 stones and it did make a huge difference. There is proving to be some disparity in the care being offered, even by the centres, so would you be happy to pm me the name of the centre. x

  • Hi

    Thanks for your reply.

    Well done for the weight loss. That's really impressive!

    Since my diagnosis I've been researching as much as I can on the condition, and can totally see that losing weight would help no end, I just was dismayed by the attitude of a so called professional. I have been taking small steps to make some lifestyle changes, and upon my recovery will put bigger and more measurable ones in place that will hopefully help me with losing and maintains a weight loss.

    I have pm'd you the details.

    With best wishes, Dian x

  • Hi

    I just wanted to let you know that, yes, I too have had poor treatment based upon my weight (at the time ranging from overweight to obese), although this was by consultants for non-endo specialisms. I've had whatever is wrong blamed on my weight even when my weight increase has been because of endocrine issues (thyroid). There can be a fatist attitude amongst certain doctors IME.

    With abdominal operations I wonder if it depends where a person holds their weight as to whether it impacts their operation... Do you hold a lot of your weight in your abdomen area?

    Assuming your endo specialist was telling the truth in that effectively operating is not possible with your weight as it is, then why doesn't he help you by offering to refer you to someone (say a dietician) who can support you to get to a weight that would make operating possible. It is not logical or practical to just leave you as you are with endo in the locations you have it. You need treatment, and I believe they should be working with you to make it possible... Not abandoning you.

    Perhaps you can discuss with your GP how best you can tackle this. There might be another centre in your area that you could get a second opinion at regarding treatment optuons/surgery. Even if you do lose weight, I doubt you'd want that consultant you saw to operate on you or oversee your care as his only offering was the coil.

    Mabes

    Xx

  • Hi

    Thanks for your reply.

    I think too often it's easy to overlook the reason for weight gain. Don't get me wrong, lifestyle contributes massively to it, but so too do medical conditions. I have PCOS, which hasn't helped my weight maintenance. That's not to say it's the only cause, but a contributing factor of it. I've not been treated for this condition since I had treatment to have my 11 year old. After his birth I was told unless I wanted more children then there were no treatment options. I now know this not to be necessarily true, and will look into this too.

    I fully intend to talk to my GP about my predicament and am hoping he can support me with referral to a dietician. I do carry weight around my abdomen, but not a vast amount. I was not considered a risk for surgery. As you say, I do not wish for this specialist to deal with me again, and upon being successful on a weight loss programme will look at other specialist centres for their opinion.

    With best wishes, Dian x

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