I’m new to this site and already feel so grateful to have found such a positive community. I have been suffering with what I believe to be endometriosis for close to 10 years now. Having started my period aged 12 and missing school every month, I thought that such painful periods were normal. In recent years I’ve been trying different contraceptions and pain relief to get my symptoms under control.
It’s safe to say this hasn’t worked. I can currently manage my pain (by which I mean, be bed bound for a day a month, severe pain for a week prior but managing not to go into A&E) and I’m unsure whether to push for a laparoscopy? My doctors so far haven’t been very helpful, and have brushed off my suggestion that my suffering is due to endo. From reading other people’s experiences, I know it can be nothing else. So far I’ve had an ultrasound which found no cysts. Do any of you think it’s worth pushing for a laparoscopy? I’m only reluctant because I’m nervous about surgery and am unsure if I should put it off until it’s absolutely necessary? Does the pain really ease after having the endo removed?
I should say, I’m 23 and will want children in the not so distant future. Sorry for the long post and thank you for reading. 😊
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Beth_May
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Hello definitely push to be seen by a gynecologist who has an interest in endo. And push for the lap for 2 reasons. A it'll give you a confirmed diagnosis which does make it easier for people to listen to you in the future. Which makes it also easier I find for work to understand why I need time off, and getting suitable pain killers etcnis so much easier now than the 12 years I had pain but no diagnosis.
And if you think of the endo growths like weeds would you rather go and remove those few weeds you have now or wait until every square inch is covered? Remove what you have to try and stem any more growth surely is the best option?
Hi Christina. Thanks for your reply! Getting a diagnosis is definitely one of my main motivations for pursuing surgery, especially with having time off work when I need it. Do you know if having a diagnosis means you are entitled to paid sick leave in the UK? I'm not sure if its as simple as that?
No so sick leave payments depend on your company policies. But there is the statutory sick pay but this kicks in after I think 3 working days being off in a row and isn't much, so if you only have the odd days off here and there this doesn't cover you. But if your off for a week or two most would be covered by statutory sick pay.
Hi lovely, the pains you are having are not normal and a huge alarm siren is ringing in my ears as it being potential endo unfortunately!
I, like yourself suffered for many many years experiencing all sorts of endo related symptoms and the only thing I now wish, is that I had taken them seriously a lot sooner.
I'm 27 now and myself and partner were trying for a baby for 2 years with no joy. Aside from the pain getting unmanageable, the fertility unknowns was the main reason that I really pushed for a laparoscopy and I'm so glad that I did.
Tuesday, I was told that I have endo that was too complex for my general gynae to sort out - it's all over my ovaries and one of the ovaries is in effect stuck! If it was simple endo she could have tried to sort it then and there and I can only imagine that this has all worsened because of the delay in my diagnosis.
I must be honest with you, surgery is NO WHERE NEAR how bad you think it's going to be! I know until you have it yourself, you will never know for sure it's nothing to worry about but hand on heart, I have stressed and worried over it for so long that it really was nothing to panic about. My heart rate before surgery was through the roof and at pre OP it was so high but honestly this is standard and a very simple procedure for those working in this field! You would be in very safe hands.
So my advice to you is.. if it doesn't feel right; and the pain is horrendous and stopping you from doing things you should be doing without worry each month then push for an investigation.
P.s all of my ultrasounds were clear and I had an ultrasound of my ovaries with nothing appearing so it is completely true that the ONLY way for diagnosis is through a lap.
Hi Faith27, thank you so much for your message! It has honestly made me quite emotional having so many people validate my experiences - I used to think I just had a low pain tolerance or it was all in my head! I'm sorry to hear of your fertility challenges, but from your kind words, I know you would make an amazing mother. You have reassured me that surgery won't be as bad as I think, and is probably necessary at this stage. I think I will make a doctor's appointment ASAP. Can I ask how difficult it was for you to get referred to a gynae? Can doctors refuse a referral if you ask?
Thank you for sharing your experiences, and I hope your endo journey takes a positive turn soon. Best wishes, Beth xx
Hi Beth, so sorry I thought I had replied to you yesterday!!
Thank you for your kind words lovely. I had a very unique experience in the sense that I was referred to a gynecologist because of the fertility issues but at the same time I had a gut feel that I had endo. During the gynecologist appointment, I really stressed about the endo and she agreed to put me forward for a laparoscopy. I must say that even on the day, the gynecologist wasnt expecting to find anything even though my sister had recently been diagnosed - her response to this (instead of understanding that it can run in families and was likely) was "hopefully not you" lol to which I replied.. hopefully!! - still feeling like a hypochondriac drama queen Haha. I can only imagine her surprise during surgery. Shes now referred me onto a specialist as mine appears to be very much all over my ovaries which I may or may not have mentioned in my response (I'm being lazy lol)
You absolutely know your own body and if your gut is telling you that this isnt right or normal, then you will find the strength to get through surgery .. and feel bloody indestructible afterwards if you're anything like me! I know I can do anything now - because surgery was SUCH a big deal for me with no guarantees of diagnosis.
It looks like you have had lots of responses through here with plenty of personal experiences shared which is great to see
Go prepared to your GP appointment- perhaps even take a log of how your periods affect you at different times during the month and be clear why you think you have this disease if it's the route you decide to go down xx
You should definitely push for the lap. Try not to worry about the surgery itself - you're asleep for it, and since you're young (I had mine at 22, 24 now) you will recover fairly quickly.
It's worth getting yourself referred to a specialist centre if you can, and getting the lap done there - I didn't cause I didn't really think it was endo, but I would if I was doing it all over again!
Thank you for your reply! I think it's the fact that I've never had surgery before, and having to demand it from my doctors is a bit daunting. But from the replies I've had, it seems like it will have to be done! Can I ask how successful the surgery was for you? Did it relieve much pain or was it just for a diagnosis?
Before I had my lap, I would have said to push for it but now I would say, don't have any surgery unless you really need it.
I had a lap in 2016 and I have been in constant pain (in addition to the gynae pain) ever since. The lap caused an incisional hernia. It may also have caused damage to my bladder because a) I have pain in that area and b) I have had to go to the toilet very frequently since the lap (as often as 3 times in 10 minutes). I am waiting on am MRI to confirm.
Morever, on the day of the lap, there were no endometriomas present. There were 4cm endometriomas a few months before the lap and a 6cm one a few months after the lap but none on the actual day. The doctor who performed the lap sent me away and made me feel like a fraud. Some months later I saw an endo specialist and he told me that the had probably went away temporarily in response to treatment but had grown back since the lap.
I really regret having the lap. Not only do have have extra pain now from the hernia and the bladder but it is embarrassing and inconvenient having to go to the loo so often.
I am now awaiting more surgery to repair the damage from the lap.
All surgery comes with risks so only have it if you really have to.
Hi, thank you for your message and for sharing your experience. I wasn't aware that the surgery carried such risks and I'm so sorry to hear that it has effected you in this way. My main motivation for seeking the surgery is my desire to have children, but it is a huge decision to make. I think I will push to be referred to a gynae first of all. I have been going to the doctor's for years hoping for a diagnosis and it's such a shame that surgery appears to be the only way to get one.
I hope your future surgery amends the damage done and you can have the quality of life you deserve.
I was 20 when I started to investigate my symptoms, though like you I was 12 when I began my periods, and my symptoms were there (albeit brushed off by GPs).
Ask for a referral to a gynaecologist - preferably one that has a specialism in endometriosis - and go along with a list of symptoms, alongside specific dates of when it has become too severe for you, as this will help them to form a picture of the past. I would definitely push for a lap - it is the only way to receive any conclusive answers, and a diagnosis.
I did not show much on an ultrasound or MRI that was indicative of endometriosis. However, (not to scaremonger you) I could have lost my right ovary if my gynaecologist had not insisted upon a lap. So, despite having severe endometriosis, this wasn’t picked up by any scans, the only way you can get a diagnosis is through a lap. I’ve had two now, two years later, they’re not the most pleasant things to have done, but you’ll soon recover and receiving some answers and a diagnosis is really important.
Hi, thank you for your message. I think it is so hard if you've suffered with this for a long time and been told all through your teenage years that 'periods get better with age', 'your pains are normal/ common' etc. It's hard to believe yourself that something is wrong, even if you know it is!
Thank you for the tips, I think I will start an endo diary to keep track of things as I often get flustered when I go to the doctors and maybe that makes it easier for them to brush off my symptoms. Also, can you request a referral to a specialist? How hard are they to come by?
I was quite upset when my ultrasound didn't show anything - I was hoping it was fibroids! - but it's reassuring to know this is the case with lots of women. Thanks so much for sharing, I hope you're doing well. Beth xx
Yeah I totally get that, but nobody knows our bodies quite like ourselves, so if you have an instinct that something is wrong, then definitely pursue it!
I’ve always found writing things down is beneficial, because I get nervous and start to miss out really important info haha, so I think it’s helpful to both you and your consultant.
Regarding the referral, I’m not entirely sure if you’re going to be going through the NHS, as I’ve been doing my appointments privately. From what I know, you can ask your GP for a consultant who has a special interest (there may be someone in your area / local hospital who happens to specialise in endo) often you can find local gynaecologists and read up about their particular clinical interests online. My gynaecologist was just a general gynaecologist who had an interest in endo before she retired - though she was still a really good surgeon. But there are endometriosis centres of excellence with gynaecologists that are experts in endometriosis - I think they’re called BSGE. Sorry I can’t be of more help on that front.
Try not to get too disheartened, it’s a frustrating journey, but ultrasounds and other scans are really temperamental. Keep strong and I hope you get some answers soon x
Im in a similar situation to you. Just had my first appointment with a gynaecologist, she’s said I can have an MRI instead of a lap so I’m doing that instead, it’s not as accurate as a lap but for me it’s better because I don’t want the surgery unless I absolutely have to have it. Just sick of the pain to be honest! But if the MRI comes back inconclusive then may have to consider the lap, fingers crossed MRI will tell us something though. Maybe you could talk to your doctor about other options and potentially MRI?
Hi, without trying to worry you, i had numerous ultrasounds and a full mri, nothing was seen. I believe an mri will only show up odd things if the endo is really severe. I had a lap 3 weeks ago which found my endo. All other tests were clear.
Obviously go for the mri but bare in mind you may still need the lap. X
It's such a long journey isn't it! I hope the MRI works for you, and it is certainly worth a shot! Can I ask how long it took you to receive an appointment with the gynaecologist?
It might not be only endometriosis. Pco is often associated. Good medicines are available. Just a diagnostic lap could help sometimes in diagnosis. Tvs if you are sexually active before that. A serum ca 125 might indicate endometriotic activity
Hi, thanks for your reply! I'm not certain it is endo but I do have a lot of the symptoms. I think a referral to a gynae will help and hopefully they can go through other possibilities with me.
I had lots of tests done before they reffered my to gyny. My first appointment with my new consultant said they wasted their time doing the other tests as it is def endo.
I had a lap 3 weeks ago which confirmed. I am so pleased he understood my pain and went ahead as i could still be going through other tests.
I would really push for the lap. Only you know your pains and what your body is going through, it really does sound like what i have experienced.
Hi, thank you for taking the time to reply. I do feel like a lot of my time has been wasted, which is what is pushing me towards this route! At this stage I haven't even had a doctor suggest to me of their own accord that it might be endo. When I suggest it, they say that I am young and periods should relieve themselves with age!
Have you had much relief from the surgery or is it too early to tell? I'm glad to hear that you finally have your diagnosis, that must be a relief in itself!
Hi Sarah, thanks for the reply! Your blog is an excellent source of information, thanks for providing the link! I'm sorry to hear about your endo journey, and I hope you are in less pain now?
I'm particularly interested in the inflammatory diet post on your blog. Has this helped you a lot? I'm already vegetarian but I know I could definitely eat better!
I would try to get a laparoscopy even if just for diagnosis. I can't speak for how it relieves symptoms - I had my first laparoscopy in March where endometriosis was diagnosed and removed, as well as cysts in my ovaries relieved through ovarian drilling, however I am still in pain in the same way I was before my laparoscopy. I'm hoping it's just taking time to heal or to die down, however I'm still glad I went through it for diagnosis so if the pain doesn't get better at least I have a diagnosis to back me up. Best of luck lovely!
Hi there, thanks for the reply! I really hope your pain relieves itself over time, but as you said, at least having a diagnosis is a step in the right direction!
I also suffered from around the age of 12 and got diagnosed finally last year at the age of 31! I too had doctors that didn't really seem interested so was given pain meds each month. I then moved to a new doctors when we moved house and straight away I got referred. In my experience since laparoscopy my periods have been so much better. I do still get the odd month where it is super painful but that's only been about 3 periods out of 12. I had the marina (if that's how u spell it) coil inserted at the same time and although it hasn't stopped my period it has definitely helped with the heaviness. I really would recommend laparoscopy especially if you want to have children too. I hope you are able to get some answers as it really is the worst thing x
Hi, thanks for the message. Wow that is a long time for a diagnosis, I'm sorry to hear it took so long! At first I thought it must be normal if I'd always had that pain from such a young age, like, that's just how my periods were? I too have been given different contraceptions and pain relief to try. I am currently taking mefenamic which is slowly working less and less for me and it seems to make my periods much longer! I will ask about the coil, thanks for the suggestion. I'm glad to hear that the surgery has eased your pain somewhat. All the best x
Push for it. My daughter is 16 had a laproscopy last week and turns out she is endo free. If we hadn't pushed for the laproscopy the large cyst (hockey ball size) that was found on her left ovary would have burst and she'd have lost her left ovary and goodness knows what else with it. You know your body best.
Hello, thank you for your reply. I'm glad the surgery went so well for your daughter and I hope she is recovering well! It's so great that she has you fighting with her. I will push for the surgery, and I wish I had sooner. I am now away at University and regretting that I won't be able to be at home with my own mum to look after me when I get it done!
I had similar symptoms to you (started my period when I was 8) I suffered for over 20 years, but I do have PCOS.
I had my first lap last month after reading lots of stories on here. I would recommend pushing for a lap, even for piece of mind. My lap didn’t find any Endometriosis, but I feel my periods have improved. The pain has more or less disappeared, but the bleeding is heavier but I was expecting that as this is only my 2nd cycle since my Lap.
Good luck and I hope you get somewhere, just be persistent, even if you have to see a different dr. I actually ended up seeing a male GP and he was actually who referred me to the Gyno. You know your own body so if something doesn’t feel right then keep on insisting x
Hi there, thanks for sharing your experience! I'm glad your pain has lessened since the surgery. Do you think this means you definitely don't have endo or is it more of a case that it might just not be present at this time? Thank you for the support x
Well the surgeon said there was no Endo and it was highly unlikely that there was previously any. At first I felt a bit deflated especially as they didn’t find anything, so it made me think what is wrong with me... but since the Laparoscopy, it has definitely made a difference, so wether they cleared my tubes when they was poking around I don’t know, but I have definitely seen an improvement. I really hope you get some answers. I know how stressful it can be when the dr just doesn’t understand your symptoms x
Judging by your words, symptoms, desires and condition, the biggest piece of advice I can give you is to undergo excision surgery with a true experienced endo surgeon ASAP. You cannot go on like this. If I were you, I'd look for the best endo surgeon possible though, not just any BSGE centre. Choose one of the best ones in the country because if you don't have cysts, you most likely have severe adhesions and/or deep-infiltrating endo and not all endo surgeons or BSGE centre can tackle that. When it comes to endo, the better the first laparoscopy is performed and the lower the chances of feeling shitty after surgery or the chances of endo to return and the highest the chances to conceive naturally. Best of luck to you!!
I'm not from the UK so don't know anything about how it works there, but I heard you need to get referred (whatever that means). In my country we just call the endo centre and book and appointment. The best I can do is advise you to look for a BSGE centre near you or a Nancy Nook surgeon on FB
Laparoscopy won't cure your pain, but can be useful for a diagnosis. I had a laparoscopy last year because along with period pain (which has been extremely bad as far back as I can remember) I was getting pain at ovulation for several days. I also had heavy bleeding and resulting anaemia. I was referred to a pelvic pain specialist who (among other things) diagnosed endometriosis, and I had a scan that showed an ovarian cyst.
The laparoscopy itself is nothing to worry about: a couple of weeks off work and a couple of days of moving about very slowly. If you are worried about nausea after the anaesthetic, let the anaesthetist know - they can add an anti-emetic.
As a result of the laparoscopy I was diagnosed with adenomyosis; no evidence of endometriosis was found. I have since discovered that (depending on the surgeon etc.) laparoscopies don't always provide a definitive diagnosis. The surgeon told me the operation would not reduce the pain and he was right. I was also given an endometrial ablation to deal with the excessive menstrual bleeding (which in hindsight was a mistake and means I'm now infertile): the pain is still very much there but comes on suddenly and inconsistently.
Basically, if you want to have a better idea of what is going on with your reproductive system, a laparoscopy is a reasonable choice. Rather than push for an operation, ask for a referral to a gynaecologist who can advise you on your options and refer you for an operation if you decide that's what you want.
It sounds like you have two different motivations for having a lap: managing pain, and fertility. But what is best for pain is not always best for fertility, and vice versa. Surgery can both help and harm fertility. And there is no point thinking, I'll have surgery to improve my fertility if you don't know if you have fertility problems yet! If you are in a position to start trying for a baby now, it might be better to try first for a bit before having surgery -- from a fertility point of view, not a pain point of view. That may be impossible from a pain perspective, I realise.
It's true that the more surgeries you have, you risk leaving lasting scar tissue, adhesions, endo starts growing on the scar tissue, etc, so you don't want to have unnecessary operations. And if you have endo excised from your ovaries, you risk damaging your ovarian reserve. A good surgeon (BSGE) should be able to minimise the potential harm to fertility from surgery. For a lot of people, surgery does improve fertility.
It sounds like the pain you are in is really affecting your life, and that is a good enough reason to go ahead and explore surgery! xx
Hello. I think what you have described is the reason I posed this question. I don't want surgery if it may cause problems relating to pregnancy later on but I do want a diagnosis. I understand that unfortunately I may not be able to have the best of both worlds!
I should say, I am in a same-sex relationship and would be pursuing reciprocal IVF (I will carry my partner's fertilised egg) in the future and I'm not sure if this makes all the difference? It's one reason I'm reluctant about surgery - I will be having IVF anyway, and won't be using my eggs. Do you know if endometriosis or laparoscopies affect carrying a pregnancy to term or does it primarily affecting conceiving?
With this in mind, IVF is obviously costly and I don't want possible endo to get worse whilst we're saving for it over the next few years. Sorry for the lengthy reply, I think I definitely need to speak to a specialist about all this!
Sorry for the delayed reply. If you are hoping to use your partner’s eggs, I would think that would make the case for surgery stronger. Endometriosis is harmful to egg quality for reasons that aren’t completely understood, but this won’t be an issue for you. It also creates a more hostile uterine environment and is thought to increase the chance of miscarriage. Removing it would be a good thing if it is there.
Hi, I was in your shoes for a while, and pushed for a lap after 4 years on the pill. I want children soon and have been told to go for it now rather than later as my lap and last scan showed healthy, despite coming off the pill, and when I pushed for a lap, was advised time and time again to wait til just before we want kids as if they find anything they will be able to remove it and give you the best chance of conceiving.
You know your body best and if you want answers, a lap is best sooner rather than later, but the NHS will be very reluctant to give you a second lap if nothing is found on the first! Good luck with whatever you choose, hope my answer made some sort of sense haha!
I'm sorry to hear of your endo struggle, I can give my personal take on this, i currently struggle with endo without being diagnosed via lap. I know it's there from symptoms.... I don't need a lap to tell me... but I also has a c section in 2016 which has also given me right sides pain on top of the existing endo because of the scar tissue building up over the incision... And that is what I struggle with now not the endo pain..... Personally I think its something ONLY you yourself can only answer. A lap will create more scar tissue and you could end up in a constant cycle of surgery to correct the one before.. endo ultimately feeds on hormones, xenoestrogens which are sadly in everything around us what we touch what we eat what we use on our body's.. this is why endo is so prevalent. Obviously there are other factors such as family genetics etc... But to excise (gold standard) the endo could work for you, or it may not.....to laser the endo may work for you, it may not.. it's a chance you take like all of us endo sufferers, we have to weigh up the pros & cons, but ultimately it's tackling the root cause which is diet, exercise, cutting out dairy, using natural products and supplementing our bodies naturally etc... Which is really going to make the difference for us. That's why it's so hard to keep up, because its worth it. But if you need peace of mind and a definite diagnosis, then lap could work for you in that respect. Let us know how you get on... Hugs x
Yes definitely! You may have endometriosis which can ONLY be diagnosed through laparoscopy. They may be able to operate to remove endometriosis and later treat you with hormones to prevent heavy periods and stop the endometriosis from growing as quickly. Its your quality of life which is 1000% worth it, lady!!! I had mine in January. Im 29 and I also have PCOS which was diagnosed in 2009 but only found out I have endo because I managed to get my PCOS under control and get regular periods, that there was another issue that had been hiding behind the PCOS.
Even just the validation of the pain and symptoms is a huge relief for me and I'm scared but excited at the prospect of having treatment to help.
My periods are very heavy and painful, but I do manage to go about my day with pain killers and a hot water bottle and plenty of chocolate
Please do see your GP and be firm about pushing for the lap. Its your health and its so important. Good Luck!
Have a lap, but not with anyone as you can come out worse than before. Find a real excision specialists (check on Nancy Nook fb page), otherwise don't bother, because they will only burn off your lesions and chances are you will have increased pain or recurrence in a year or even less.
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