My backstory is I came off Microgynon contraceptive pill a couple of years to regulate hormones before trying to conceive. Since coming off pill my periods have not been fun at all and symptoms seem to have gotten worse.
Me and my husband have been ttc for 7 months which is not a very long time bit we decided to go to a private fertility clinic and doctor noticed a submucosal fibroid which he said would be having an impact on my heavy periods and chances of conceiving. He also mentioned my AMH level is 12 which is lower end of normal for my age of 34.
I then get referred to a gynaecologist who also recommends a laparoscopy alongside the hysteroscopy. I have option to wait 12 plus months on nhs or go private.
No signs of endo or pcos were found on scan at fertility clinic but as I understand endo is not usually recognised on scan.
Main abnormal symptoms which I have are following:
Spotting average 4-5 days before period
Very heavy period. For example I went to do food shop during my last period only out for an hour and the soaked a super plus tampon and it leaked.
Tmi but I also have symptoms that raise concerns I could have IBS. This is especially bad during my period.
I have felt like fainting and need to sit down during heaviest days of period.
Lower than average AMH levels which gynaecologist thinks could indicate endo.
However, I don't have pelvic pain, severe cramping or pain during sex.
Maybe my symptoms could all be down to the fibroid but also do wonder if I could have endo and if laparoscopy is worth it.
My options are:
Fork out savings on both procedures privately for peace of mind and hopefully better success with ttc and more normal periods.
Just pay for hysteroscopy to remove fibroid and hope this improves symptoms and wait on nhs waitlist for laparoscopy (if seems like needed)
The fertility clinic doctor say laparoscopy not worth it and to consider ivf if trouble conceiving but wonder if they have vested interests since they are an ivf clinic. I would obviously like to give my body best chance of conveiving naturally.
Any advice much appreciated.
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Jennifer89
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It's a myth that endo doesn't show up on scans, if you have an MRI or a TV ultrasound by a good sonographer endo will and does usually show up. If you have a fibroid or adeno mysioisis your symptoms could be caused by that. As far as I know there is no need to have a laparoscopy for a fibroid, but I guess that very much depends on how large the fibroid is. Fibroids can be very small and not a problem or really big and need invasive treatment.
The main symptom of endo is really severe pain during periods, pain during sex and eventually pain right through the cycle. Some people do have endo and very little pain but it is unusual. Your symtoms sound much more like they are being caused by fibroids but the best way to tell is to get a scan.
Having a laparoscopy is often portrayed as no big deal but you have to have a general anaethetic and you are cut open which can cause internal scarring. I have had just two laps and have been told I can't have any further surgery as i have so many adhesions form the previous surgeries, it is quite a serious procedure so personally I would not have one unless there was good evidence that i needed one.
A good surgeon also will not usually carry out a lap without a scan as the scan helps them see how to carry out a more accurate op.
Fertility clinics do often have an agenda, I had fertility treatment at a clinic and they completely failed to mention that I had terrible endo, they did an ulrasound of my ovaries and a hsytoscopy though not an MRI or TV ultrasound but they never mentioned the endo.
I'd say get a proper scan so you can see what the problems actually are, then once you know what the issues are you can make an informed choice about treatment.
Avourneen I had scan at fertility clinic and they mentioned no sign of PCOS or endometriosis. The fertility doctor advised he does not think a laparoscopy is necessary and to just have hysteroscopy to remove the fibroid. Confused as the gynae he referred me to says it would be worth me having a laparoscopy too but as you say it is more invasive surgery than hysteroscopy and concerned about potentially needlessly paying for something I don't need.I don't get pelvic pain, severe pain during periods pain during sex etc..
Is an MRI more effective for detecting endo? I wonder if even a third opinion is needed on this..
My fibroid is small, just under 2cm but apparently awkward position in uterine cavity.
Is a private gynae advising you ? Remember a private gyane will stand to gain a lot of money from a carrying out a lap…What type of scan did you have ? If it was an ultrasound was it internal or just an external one? An external one won’t pick up endo but even an nternal one could miss it if the sonographer isn’t specialised in gynae scans, but if you had yours at a fertility clinic they should know about endo. But as I say I went to a fertility clinic and they must have seen that there was something wrong (stage 4 endo) and they didn’t say anything. They only focus on fertility nothing else. I DM you some useful info later on.
I had an internal ultrasound scan done. They didn't mention anything about endo. Only thing they commented on was fibroid which was interesting as had scan couple years ago and they didn't raise concerns about the fibroid. Hopefully the fibroid will help my heavy period symptoms and improve chance of conceiving.Yes it was a private gynae I saw so do wonder if vested interest there. Thank you, that is really appreciated.
hey just reading what you have said I have both endo and adenomyosis however it was mostly the adenomyosis causing my issues my endo was worst due to bowel involvement but thankfully hadn’t got to my ovaries. I have a focal lesion in my uterus at the fundus it was first diagnosed as a submucus fibroid until I wa seen by a specialist in endo and adenomyosis who then diagnosed it as adenomyosis I also had TV ultrasound and MRI to confirm. Maybe just worth pushing a bit more to see a specialist. It took me about 8 years to get diagnosed and until diagnosis they just kept saying I had low ovarian reserve which I did due to the endo and adenomyosis not early menopause as they were saying. Good luck X
Thank you, I do think another opinion from specialist with scan would be worth it. Ideally I want to get all answers before making decision on having a laparoscopy..
Each of us presents differently so trying to call potentially complex future decisions based on the part information you have is going to be hard.
While Avoureen is correct scans because of the delivery issues can be a mixed bag as to whether endo is revealed or not. My family’s experience of it is that 3 of us all had endo at differing levels of presentation, none showed on scans, or the information present on scans was not interpreted correctly, all found with a lap.
You have two issues , your symptoms&signs, & trying for a family. Both have good reasons for pursuing and ruling in/out endo as it can have a significant effect on the outcome and your choices. If you have endo earlier treatment can be the recommendation for fertility issues and the effect of IVF on endo needs to be in the mix for you to have fully informed consent. Too often we are left with part information. To have a lap’ in the end is a relatively minor procedure for clarity overall if done by a fully qualified endo specialist rather than general gynaecologist. How you go about it is another issue and really depends on your personal circumstances.
In a previous lifetime i was blessed enough to be working as a complementary practitioner ( acupuncture and nutrition) with infertility and pain relief during labour. It was rarely a question of either or in terms of paths taken but a choice of how to put together the best care overall for the couple or partner with fertility challenges. What I learned is those who took a rounded approach came out best overall whether they had children or not : they coped better, their health often improved across the board, the side effects of treatments if they took them were less onerous and they felt more in charge of their decisions. There are other significant gains too.
You might wonder here my point being …. I would use any time I have to look at how best to support the health and fertility I have now , potentially looking to improve it . I’d look into if those choices are also positive choices for endo too. All whilst waiting for a lap or other treatments that might be needed. Often it uplifts everything and you’ll be in a better place , feeling more in charge and hopefully less stressed and worried about what can be a nasty set of issues. You might want to look at Katie Edmonds story and work on @heal-endo and her book Heal Endo ( full of well researched info and studies ) as well as someone like @corerecoverypt who has lots of useful info on why / how good pelvic core health really helps both issues.
Thank you for this advice. It is tricky decision to make. Curious you mention that 3 within your family had endo. Did you all portray similar symptoms? Also did you experience any negative side effects from the Laparoscopy?
I have found process of ttc a bit draining at times and of course my unusual periods have made me feel something is not quite right..
I do hope to have a baby with my husband but not fussed about having more than one child so in that respect time is a bit on my side.
We had a few overlapping symptoms but actually a wide array of presentations. It looks as if it extends to slightly more distant cousins too. We all have major gynae issues. Wrong great grandparents 😉 ! All the issues respond to a mixed approach rather “rigidly” sticking to one answer only attitude. I found out very late in life and not without a heavy price but I also know have helped myself with self care that in the end is also recommended for endo and haven’t had the worst time like some of my family, I have avoided some of the least palatable options and their side effects as a consequence that some older Endo treatments can end up causing so again some pluses to be appreciated. However I have needed some help and knowing has given me informed options at a really difficult time. I need a blended treatment programme 💗Everyone can respond differently to even minor ops but I have to say knowing for me has been a blessing and saves a lot of crap health care overall . X
hi Jennifer, I’m no dr but I have endo myself and even though it isn’t showing on scans it can still be there, that’s why it took me so long to be diagnosed, surgery is a good option as it helped my pain for roughly a year before being put on a hormone blocker, after stopping I will need surgery within a year, if it isn’t kept on top of it can get quite severe, although it’s expensive it’s worth it as they will see if it’s there as a diagnosis and they will remove scar tissue, this temporarily helps the heavy periods
if you do have a laparoscopy, make sure you see someone who is expert in excision surgery which is what you need and NOT ablation (which can cause more scar tissue and problems). Have a look at Nancy’s Nook, (there’s a website and FB page) and they have a list of excision surgeons around the world, there are some in the uk. Mr Pickersgill I think is Manchester way, Dr Minas in Woking/Guildford and Dr Morsi in the midlands are all expert excision endo specialists and on the Nook list. Good luck!
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