I had my 1st gyno appointment this week after my internal scan came back with signs of endometriosis on the ovaries
So I was referred to gyno hoping they would explain more in detail?
I was told my Endo if itās Endo? Because from the scan & my symptoms thatās what it is indicating that it is mild/moderate
I was just asked questions on my period
I also told them Iam looking to get pregnant in future as I suffered a miscarriage last year but the fact that I got pregnant was positive that I will be able to try again and this was the advice given.
I have been scheduled for surgery to investigate further for Endo or to remove any Endo found?
I was asked in the appointment and gyno was waiting for reply and gave me until the End of typing his notes to give an answer.
I asked if futher scans are available to look into endo he told me this is not possible as it wonāt give them a clear picture of endo!
I left appointment very disappointed and confused as to if itās showing endo on scan and some of my symptoms indicate that why can they not provide more information.
Iam now concerned as the report shows cyst on both ovaries.
I feel like I want a 2nd opinion just wondering if anyone has experience anything like this or this is the regular routine once your referred
I just thought the appointment would be more informative and asked more questions around my symptoms as my main symptom is fatigue around period takes 1 week to recover from period & symptoms start 2 weeks before period!
Many thanks š
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Starfish44
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As far as I'm aware, unfortunately none of the non-invasive technologies give a sufficiently good view to confirm diagnosis of endometriosis as the shapes seen can be confused with other things that require different management. But the other reason they do surgery (is it a laparoscopy?) is to actually remove any endometriomas found while investigating / confirming, which they can only do with surgery. Not all places are sufficiently specialised and experienced though to do the surgery, especially if any of the endometriomas are stuck to other organs like bowels etc. There is a list of officially qualified endo surgery centres, your best bet would be to check that the place you are being referred to is on this list and if not request that you be referred to one of the specialist centres. The list is here: bsge.org.uk/centre/
I can empathise with being overwhelmed and being asked to make decisions without enough time or info - have only had one gynae referral for endo so far and it also felt a bit rushed. I was told that since the ultrasound results were inconclusive but my clinical history pointed to endo, that I should try taking the combined pill back to back first to see if that would reduce / eliminate my symptoms. I ended up getting cramps and spotting every day on the pill, so it didn't work. When I tried to contact the consultant to ask what alternatives I should try (which my GP told me to do as they didn't feel confident prescribing an alternative themselves) the receptionist told me the consultant would call me back, and they never did. Also I found out that I had been put back on the waiting list for some reason, so no idea where I am on it. Fortunately in the meantime the intervals between my periods has started to get longer due to perimenopause, so things are easing off a bit and I'm hoping that maybe if they stop I might be symptom free (although I still have bowel and bladder issues I'm not sure if they are related or not).
Hello thank you soo much for your reply believe that it gives me reassurance in reading other people experiences also and their journeys as sometimes I can relate and sometimes Iam also soo grateful that my endo is mild/moderate compared to some of the painful and brave stories shared by so many women on this group.
The confusing thing on my part is that the points my gp gave me from my scan which were cyst on ovaries but she only told me one and that it was more on one side aswell as on my flopian tube and that they were worried the endo growth could seal the Florian tube or what they call kissing tubes
When I read my file on my nhs app of the scan report it described that cyst were found on both ovaries. Then when I had my appointment the gyno said that cyst were found on my ovaries but that were small?
I am also worried that some of my symptoms are linked to peri menopause? Which I told my gp she advised me to go to the referral appointment but nothing about my hormones was discussed? And the fact that I do what to become pregnant makes it confusing as to not put me on the pill if Iam trying for a baby, but then it would help with the hormones?
Sorry to hear that the pill hasnāt worked for you? Have you been on the pill previously or is this your first time?
It was the first time that I had been on the pill. I know that it can take time to adjust but was also concerned that there was no advice on when in my cycle to start taking the pill (all the leaflets only describe how to take it for contraception, not for endo so I suppose use for endo is off-label?). I'm getting the impression that there isn't enough knowledge about hormone cycles generally and it is really surprising to me that most of the specialist knowledge about endo, which is thought to have a hormonal cause, is focused on surgical removal and the hormone treatments just seem to be based on guess work.
Thatās interesting to know as I have never been on the pill and thought it may be an option? But because I said I would like to have children it was ruled out?
Your completely right there is not enough information or even leaflets to explain endo and the different symptoms women face as everys endo is so specific to each person!
So little is discussed then you are referred for surgery?
This one is a little difficult, I've been a diagnosed endo sufferer for 11 years now. My first consult told me it is very difficult to diagnose endometriosis on an ultrasound as it can be many other things I.e scar tissue. I had my first surgery in 2012 when I was 15. They told me that there was definitely no endometriosis only a huge polyp on my ovary (weighed 17lb). Time went on and my periods was still unbearable. I went back to the GP and they referred me back to them, went through different contraception which none of them agreed with me, all gave me horrendous headaches. Then they agreed another laproscopy. On this laproscopy they told me that I was absolutely riddled with endometriosis and it would be very unlikely to conceive naturally (I was 17). I had a few years relief and was going through the fertility clinic and caught naturally with my eldest. (Best relief I ever had being pregnant because no periods = no pain!) After my son was born the pains started again so had another laproscopy and again they removed the endometriosis by laser they said this is the way they see the best results of longer remission. I went on to get pregnant with my youngest not even trying! After my youngest was born I was bleeding for 7 months none stop my iron was so low, I was placed on iron medication. Went back to the GP who re-referred me again and now I'm currently on an injection to put my ovaries to sleep to give me a break which in hindsight is like your in menopause and my next surgery is on the 21st of September. Honestly the point of this post is, if you are not happy you 100% seek a second opinion, I'm so glad my mum forced me to make that first GP appointment otherwise I would of been none the wiser. You know your body best, you know when something isn't right. Don't give up until you get the answers you need! Xx
Thank you soo much for your reply and also sharing your story and experience. I feel like all the replies on here have been more helpful than my actual appointment maybe because it was soo brief and itās something that they deal with everyday.But when it is your body and has an effect on your lifestyle as well as relationships and mental health your looking for any information insight that can help yourself understand more.
Iam soo happy that you went on to have children as this is something that I do want but canāt help but be scared because of my pervious miscarriage and now learning about my possible endo I canāt help but be scared something will happen again!
I feel alot more reassured so nice I posted on her to hear similar stories but I guess in your own mind you just want to know the most information or excactly where the endo is and the treatments but like you said maybe itās not that easy to diagnose.
I will go for a second opinion. And Iam also down for the surgery hopefully this will give me more answers that Iam looking for.
It is quite possible to see a lot more detail if you have a scan done by a specialist sonographer who knows what they are doing and any good surgeon would send you for an MRI as it helps them plan and carry put the lap properly.
I would definitely go for a second opinion, the gynae is there to help you. They should explain things clearly and do a peoper investigation before the lap. Often when surgeons just do a lap without good scanning they miss part of the endo and adenomysiosis which often goes with endo is very easy to miss on a lap. Your gynae sounds as if he/she is not very concerned about comminucation properly with patients which shows a certain degree of arrogance. You should have come out of there feeling reassured and feeling that the gynae cared and with proper info.
Where are you based ? A bsge centre is a good idae as the gynaes there and the sonographers will be specialists in treating endo. I sawa general gynae for my first op, he didn't do proper scans and missed about 75 percent of the endo on my op so I had to have another op. Find a good gyane you feel comfortable with. Good luck.
This was my first appointment to see gyno after doctors referral so I didnāt really know what to expect? My gp did advise that I might have an MRI scan to see more in detail about the endo. However in my appointment it went straight to surgery which I was quite shocked and did ask before the surgery is there not another scan option such as MRI which he replied the scans canāt show them much more detail then what they have already and only surgery is the way to find out more about endo or remove endo?
Iam not sure now to let my gp know I was unhappy with the appointment? Or to just go privately to get second opinion? As I have requested for the surgery which I felt rushed & pressured to give an answer in my appointment to!
My experience of the NHS has been dire tbh, they just donāt know enough about womenās health or Endo.
I will never forget the face of a gynaecologist I saw when I told him Iāve just had a 24 day periodš he was mortified but didnāt have any idea about it lol
I saw a specialist the other week, private consultation, it was Ā£170 and best thing Iāve done. She instantly made me validated, said itās highly likely I have Endo and I need the lap surgery.
Whilst NHS just didnāt have an idea what is wrong with me!!!
maybe its worth paying that and just seeing what an actual specialist say?
I had ultrasounds two years ago and all clear but my specialist said sometimes endo canāt be seen on ultrasounds or MRIs.
In my opinion I would try and see a specialist and get on the lap surgery list asap as in my area itās an 18 month wait
I feel like I put soo much hope in waiting for my appointment and receiving information to help me understand my body more or dicuss my symptoms but it was all dismissed with you can have surgery few mins into first appointment to make matter worse he had typed up a referral letter to my gp that had incorrect information that I had just told him few mins prior!
I defo think I will go for the 2nd opinion just to understand more as I feel like my gp said one thing my internal scan report said another & now when I actually see the gyno he gave the least information!
I think for me the funniest was when he asked if my period is painful of course it is!!!!
Hi, just adding to the other replies. So far this all sounds right. Scans will give them an idea of what might be going on, but the only way to know for sure is to actually look in surgery. Do you know if the place you're getting surgery done at, is an accredited endometriosis centre? Here is the list: bsge.org.uk/centre/ If not, then I would highly recommend talking to your GP asap about getting referred for surgery through one of these instead.
In terms of fertility, you want to get the best surgery possible and get that done first. Once you're recovered from that, you'll be in the best position to then pursue the conversation about fertility with your GP. With the NHS, things are generally done step by step, one thing at a time. Effective surgery can often resolve fertility issues for women with endometriosis so that is what they'd be looking to resolve first.
When you see a consultant prior to surgery, do discuss fertility as a concern with them. You could also have an appointment with a GP to specifically discuss fertility and simply use that time to ask them as many questions as you have about how the process for addressing this will work, what is available in your area to help people, what the plan of action is for you, what order things will be done in and what all the options are.
From what I know generally the best way to see endo and remove it is through surgery. Itās also good if they can take biopsy. You could ask for an MRI but since you already had that scan which show signs of endo and youāre on the list for surgery thereās not much point. The best way to remove endo is through surgery. Thereās some pages on insta which are great to follow as they are going on the same journey as you. Sorry Iām not much help, most gynacology appointments are shit tbh.
Hi thank you for your reply and sharing your experience also helps as I thought is it just me did I not as the right questions should I have said more? The whole appointment seemed rushed and a lot of my symptoms dismissed or the answer just surgery which I understand is probably the best way to diagnose endo but I just thought they would be more options available because surgery! Thank you for your honesty š
From my own experience endo is still misunderstood and lacking research and medical publication for NHS staff to go off confidently and no textbook treatment process to follow. This results in drs deciding different treatment routes which isn't always beneficial for the patient and results in vastly different positive outcomes for patients and misinformation different advice and confusion for the patient deciding which process is best per individual case.In my past I was young and didn't question specialists as I should and I should of trusted my own body and self thought knowledge from trusted published usa studies as they are way ahead in studies for Endo yet still not fully understood.
As I got diagnosed during a fluke operation on my bladder for alternative reasons I would still believe I just had heavy periods and brushed off as exaggerating symptoms from 15 passing out in pain vomiting bowl issues etc.
Any way once a biopsy during surgery was taken from my bladder to rule out cancer came back Endo results.
Dr said further biopsy to confirm vaginal or bowl evidence but wouldn't change outcome, end of the road my agreed treatment is deppo injection contraception as study's show can slow spreading Endo cell then try for baby for a year before requiring medical help towards fertility as not always needed. In my opinion surgery can worsen the outcome risking further damage or scar tissue and should be used as a last resort xx
Hi fedupfemale1 firstly sorry for everything you are going through and thank you for your reply as this is exactly how Iam feeling right now just confused and actually questioning if the gyno I saw was just regular gyno and not specialist endo gyno which I think they should state or if your not happy in your appointment be referred to an endo specialist or at least be given more information on actual endo or support groups.
I totally agree thereās not enough information out there or doctors are also not aware that doo many womenās symptoms link to periods is endo. I have symptoms or 7 years ago and endo was never mentioned.
I will possibly go private to have another scan and someone examine and explain to me in more detail the findings and go from there x
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disappointed!
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