Hi everyone, just looking for some advice/stories of experience. When I was told it looks like I have endometriosis, my doctor’s solution was for me to take the combined pill for 6 months straight and only then have a week’s break (to avoid the intense period pain). I’m coming up to the break now, but throughout this “cycle” I’ve been spotting randomly (sometimes for weeks), cramping randomly but severely, still having intense bowel pain and (TMI) just experienced a heavy amount of clotting.
I just wanted to know, has anyone else been advised this? It was explained to me as perfectly healthy but I’m currently in a lot of pain despite still taking the pill.
Also, how do I go about asking for a laparoscopy on the NHS? I’m 20 years old but don’t plan to be trying for a baby for a good few years — am I likely to be ignored?
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So I had to be taken off the combined pill for high blood pressure. I was referred to gynae and in my first appointment (2 weeks ago) I’m already booked in for laparoscopy at the end of November. Due to the mental health issues it causes and time off work, she just booked me in. I feel very lucky compared to some other people’s stories. Just let them know how much it effects your life! X
It sounds like you had a lovely doctor! Sadly I did explain at the time the effect it has on my life but I was told “they’d only put you on the pill afterwards anyway” and that there was basically no point .. I think I’ll try my luck again with a different doctor and hope for the same outcome as you! I hope everything is sorted out for you x
Oh I really hope it works, I was shocked if I’m honest! But they said one of the most effective things they have found is the coil, as it constantly releases hormones, where as the pill, levels are high once you take them, then it drops and it’s a constant fluctuation x
I currently take my combined pill back to back but I take it 3 months at time then have a weeks break and continue, this was advised by a specialist, he said although your body is not having regular periods yoye body should have at least 3-4 period a year, maybe this could be a reason why your spotting.
As for getting a laparoscopy, you’ll need to see a gynaecologist, I’m not sure whether you have been referred or not, if not i would request to be, but if you have suspected endo it’s best to get the lap done to see what stage and to what extent the endo is
I used to take it for 3 months as you do but it seems my doctor was of a different opinion to yours — I agree that 6 months may be pushing my body too far.. my only worry with reducing it to 3 months again is maintaining a good work attendance record, as I also suffer frequent UTIs and mental health issues (which all could very much be related).
I was seen by a gynaecologist before, that’s who told me to take the pill this way; I think my best option is to get a second opinion!
Hi there, apologies for long reply! I have some experience with this. There seems to be a lot of misinformation with the gap week on the pill. I’ll leave a link below just to show you some of the information out there. First, the gap week isn’t a natural period, it’s a withdrawal period. I didn’t know this or was properly explained this for years. The gap week isn’t actually required because your hormones stop the lining from even building up so there is no need to shed anything. Your body with bleed when you go from 21 cycle on the pill to longer time without a withdrawal because your body gets used to the 21 day cycle. My consultant done research and said the gap week doesn’t perform any scientific related benefit, causes me so much pain and I take the pill back to back all the time. I went on 3 month, then 4 month, then 6 month cycles and now I’m on it all the time. It took a while for my body to get used to it. I still have pain because I haven’t had my second operation yet (the first one was ablation and had low success rate, getting excision next). I’m hoping that I won’t have as much pain after the next op. I’m going abroad for the second op as there is no options here where I live. The other consultant recommended the pill after the op to help, it’s meant I haven’t had to miss work from the withdrawal bleeding days. I can’t believe that still tell women that the gap week is necessary because it’s not. I did my own research too and apparently it was to make women feel normal and know they aren’t pregnant! You couldn’t make it up 😔 most gynaecologists/gps haven’t done there research on the gap week, and this is 60 years later!
Just to mention on the lap, don’t leave it too late, the only way to actually know you have endo is to have a lap. It’s really important that you get a good doctor they can diagnose and treat you properly so I’d definitely recommended seeing a doctor in an endometriosis Center. There are some in the U.K. (bsge Center) or doctors like dr Chris Mann and dr Peter Barton Smith. You are not too young for a lap, don’t let anyone tell you otherwise. I’m almost 30 and I wish I had known earlier. Best of luck with everything. Xx
Thank you so much for this — it’s crazy how many times I’ve been told it’s a “doctor’s opinion”.. when it comes to me being in pain, there shouldn’t be a need for ‘opinion’, only facts! I will definitely push for a laparoscopy x
Hi there, I have had experience with this. I was diagnosed with endo in 2015 with a laparoscopy, I was 21 at the time. It was so difficult to get my lap, I had been under a gynecologist since I was 17. I've also had anesthetic injected into the muscles around where I experience pain to cope with the severe pain. Now that I have been diagnosed they are very reluctant to give me another lap as in their own words "it will only come back again if we remove it."
So I have been taking my combined pill for 6 months then having a break for about 3 years. Occasionally I will have a breakthrough bleed, but I still suffer with the pain.
I was then told that my body can no longer cope with the 6 month usage at a time and to shorten it to 3 months. However I have now been advised to change to the mini pill, as it is much lower in oestrogen than the combined pill. I would never have a break. This is due to be changed over on Tuesday next week! X
1) The progesterone-only pill is always better than a combined pill for endometriosis.
Spotting and cramping are common within the first 1-6 months of taking the pill. If it doesn't subside within 3-4 months and disappear within 6, you need to discuss it with your gynaecologist.
3) Endometriosis is a complex immune-based disease oftentimes related to an upset gut, upset immune and endocrine system. You need to work on many aspects of your life (nutrition, supplements, movement, sleep) to reverse that. I suggest you read this article of mine for that: healthunlocked.com/endometr...
4) NOTHING will ever compare to having advanced laparoscopic excision done. Please PM me to get the names of the best endometriosis excision specialists in the UK (working within the NHS).
5) Heavy clotting in particular can be reduced by taking proteolytic enzymes such as serrapeptase, nattokinase, bromelain and papain. Look into supplementing those and it should help.
I don't think you should say the mini pill is always better for endo. It made me feel as if I was constantly on edge and anxious, with headaches and bleeding every 2 weeks. Different things work for different people and you should not be afraid to keep going back to your doctor if something isn’t working for you.
Very very true but 1) not taking estrogen is what's better. I was talking about what stops endo from growing (but endo produces its own estrogen and is resistant to progesterone so taking birth control should technically be pointless but it works for some so clearly not everything works the same for everyone) and 2) there isn't just the minipill. There's Visanne and many other options such as progesterone patches and creams.
So the way to get referred is to tell the gp that you need to be referred due to the suspected endometriosis. If they question tell them it clearly states in the NHS guidelines for the diagnosing and treatment of endometriosis that if it is suspected that they should be referred to a gynecologist with a specialist interest in endometriosis (this is important not to go to a gynecologist who has no interest in endo). If you want to look up these guidelines yourself you can look up NICE guidelines for endometriosis and they will come up.
They may say bs like your too young or whatever but it is your right and the NHS guidelines clearly state anyone even if they are under the age of 17 should be referred if they are experiencing any of the symptoms such as painful periods that disrupt day to day activities.
If you aren't comfortable with confrontation I recommend taking someone along who is fine with it. As your gp should have already referred you they might not do it without a push unfortunately.
I am currently going through this as we speak! Had my third lap in June (I had 3 in the space of 10 months) and then went back on the pill to keep periods away whilst healing and working out whether we wanted to try and conceive again. My consultant said the same about not needing a break and to just continue taking pill back to back. He did say I may get a spontaneous bleed or spot and after my 4th month I started spotting and feeling like I was getting a period. I then had two evenings where the pain was bad and I had heavier bleeding but then next day would go back to just spotting and not much pain. I also got my sciatic pain back which I’ve had at varying degrees of pain every day for last two weeks. I saw my GP who said that it’s very common to spot and get pain when you back the pill without a break and that having the break may reset the body again otherwise the spotting and pain could continue. So I spoke to my consultant and he said try a break and see what happens. I stopped weds and since Friday have been in so much pain, mainly sciatic and low down on my bottom and left side, the worst I’ve ever had! So not sure what the solution is, I just hope it starts easing soon and goes back to normal!
I can see why they think delaying a break is a simple solution for pain management, but we’re either in moderate pain almost all the time without a break or in severe pain on our breaks.. doesn’t seem to be a right answer when it comes to this!
My doc has referred me to gynaecology but the waiting times are really bad where I am. I was advised to take the pill continually as that’s what they recommend, but to take a break if I get bleeding (I’ve only had a couple of days worth of spotting). Has your doctor referred to gynae yet?
I’ve been to gynaecology before — theyre the ones who told me to take the pill this way because surgery “wasn’t a solution” :/ I want to be referred back to them for a second opinion, I really feel like I can’t live like this!
Yeah I’d definitely go back to GP and ask to be referred again for a different opinion. I did this with another specialty and the GP actually did her research into who was best to be referred to. Then that surgeon recommended someone better who had more experience. Definitely don’t take no for an answer. It’s your health and you know your body better than anyone. Not sure how I’d cope if pill and painkillers didn’t work. Good luck! xx
I've had a similar experience to you, only my breaks are meant to be every 3 packs in a row.
If you go to your gp, they can refer you to the endo specialists at the hospital and they can book you in for a laproscopy after having a consultation with the specialists. That's what I've experienced anyway. And yet to have a laproscopy, but I think it's only an amount of time before I need to go for one.
Hi, I got told to take it three months at a time but I haven't, due to the intensity of the pain I can't walk some days so I refuse to have one until now, nearly a year after my last period, I have been spotting/ bleeding for three months now. I am only 21 and was diagnosed 3 years ago, but pain has been unbelievable for about 6 years.
Speak to your consultant about the way it is affecting your life. I've had three laproscopys all to treat endo within the past three years.
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