Hi all, I’ve been on this pill for nearly 7 months now for suspected endometriosis, and it hasn’t many any difference to my pelvic pain which happens at all times of the month not just on my period.
Also, the gynae advised it would likely stop my period but instead they’ve just become irregular and I now bleed for days on end, and sometimes my period comes back again when it does finally stop so I’m having periods like every 2 weeks.
Struggling to see any benefit of staying on it at the moment while I await my laparoscopy (which I have no date for) but I’m scared about endo growing and it affecting my fertility as I’m hoping to start a family in the next 1-2 years but really want answers first
Does anyone have experience with this pill? And also know how quickly endo can grow?
Thank you x
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CandleCat
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I am new to the forum but have had experience with desogestrel. I was recently advised to take it while my IUD was removed in preparation for surgery. I had a very similar experience to you in that it did nothing whatsoever to ease my pelvic pain and my bleeding was incredibly irregular despite being advised to take it with no 7 day break.
However, my experience was short lived and I only had a course of around 2 months. In relation to other pills and/or mini pills, over the years I have found that they don’t do much to ease my symptoms and I usually experience awful side effects. Before the fitting of my IUD, I think I tried over 14 different pills, none of which ever worked well for me. I would either bleed continuously or erratically, they did nothing for my pelvic pain and they were horrific for my moods!
Although, as you’ve mentioned that you’re awaiting your laparoscopy then it may be a case of some help is better than no help even if the desogestrel is only taking the edge off a little bit. It will depend on what your symptoms are like with no hormonal intervention. If they’re exactly the same then maybe it is redundant - but only you can be the judge of that.
I don’t know if there is any kind of scale for how quickly endometriosis can grow/spread. I will say that I’ve waited 13 years for a diagnosis and at my first laparoscopy around 10 years ago, I had no visible lesions, whereas this time around I had several. I would imagine that this is different for every single sufferer. However, seeing as you are awaiting treatment, I wouldn’t be too concerned that it could change too radically in that time frame.
I understand this worry though, as it’s a concern I’ve definitely had at times. I used to think that the longer I waited, that the longer it would have to cause damage to my body.
I really hope that you find some resolve, that your surgery goes well and you have an easy recovery!
It is frustrating how many pills we’re put on. Did anything else work for you instead? Where did they find your endo?
I think my symptoms are the same on the pill so I may discuss going off it. Thank you for your info provided, that’s helpful to know. I hope it can’t grow too much in the time I’m waiting for a laparoscopy.
I definitely have that worry too that it could be continuing to cause damage as I wait for the op.
I think they just throw them at us to shut us up sometimes! In all honesty, I have never had anything that’s offered any relief from the pain. I had an IUD (Mirena) fitted when I was 18 and that stopped my bleeding completely. It was incredibly beneficial for me as I was anaemic with the blood loss from bleeding for weeks on end and the pain was so debilitating that I literally couldn’t walk sometimes. I did (and still do) experience debilitating pain with it in, so it was never effective in that respect. I understand that different people have different reactions to different contraceptives and hormone treatments so I would be wary about recommending it, but it changed my life for sure.
I had patches on my abdominal walls, pelvic patches near the perineum and I had patches beside/on my urethras. I do suspect that there are lesions inside my kidney/water system and other places that are harder to reach - but I’m in the process of trying to persuade my gynaecologist to send me for an MRI to get a better gauge on this!
Definitely discuss it with your doctor and if you do decide to have an IUD fitted then my most recent consultant did this under anaesthetic during my surgery so that is something worth considering too. Hopefully you aren’t waiting too long! x
hi hun hope you are well? I've had issues with my periods for 24yrs now(wtf 😂) and I've been on every combination of hormonal treatments you can imagine, non of them reduced the pain or my bleeding, if anything it made the scar tissue grow faster and the pain to increase! I'm unable to work now 😔 if I could go bk and change it I'd refuse all hormonal treatments! I hope you get the help u need but if you eva just fancy a rant gimme a shout xxxx
Hello, thanks for your reply So sorry that you’re still having pain and unable to work!
That’s a worrying thought that the hormonal treatments could even make the scarring grow.
My doctor refused to see me about this any more until I tried going on the pill which was really frustrating as other pills caused me so many side effects previously.
I hope you get some relief from this and likewise if you need to rant xx
sounds like you need a new gp hun! how long have you been on the pill now? I found all of them to cause issues from migraines to excessive bleeding / bruising. I know ur painluv I've been on cerazette before migraines was my biggest issue with it.I seems to be a running theme on here, so many women are being forced on the pill for a period of time (excuse the pun) 😂 before they will even contemplate trying to help you! is disgraceful. xxx
Hi CandleCat,Really sorry to hear you have been having these problems. I was originally put on Cerazette at 16 for 'bad periods' and although it took a while for me to settle into a routine with my periods, it then helped me for around 7 years. Although I still had some of the symptoms, they became much less frequent and severe.
After this time, I noticed the same symptoms creeping back in and becoming more and more regular and severe. My GP had suggested that I have endometriosis, I have all the symptoms including bowel issues but she suggested that due to some extensive surgeries I have had in the past, it may be worthwhile pushing a Laparoscopy as far into the future as we can whilst we manage my symptoms.
She believes the Cerazette worked for a time and now my body is 'used to it' so I recently had a Mirena Coil fitted. It's taking me some time to get used to this as the fitting did not go as smoothly as I have heard others speak about but I am starting to settle into it and hope that my symptoms will settle a little soon!
Feel like I have kind of given you my whole life story there so apologies! But I did have a really successful experience on Cerazette for a fairly long amount of time but I recall it taking around 9 months for me to settle into it. It was 9 months of irregular bleedings and symptoms all over the place but then one day nothing! So I hope a similar thing happens for you, albeit a little quicker!!
I was put on Cerazette and was on it for about 6 years (this is before I thought I might have endo). My periods did stop entirely with only the occasional breakthrough spotting, but like RioBeau, it did take 9 months to a year. But I remember my nurse saying I was one of the lucky ones so I'd guess that it doesn't work like that for everyone! Also when I came off it, my periods returned but they were much lighter than before (although pain has returned).
Not sure if that helps! I would say if you've been on it 7 months and are feeling absolutely no difference then maybe it's not the one for you, I would have thought by now you'd feel some benefit even if periods hadn't stopped entirely, if it was going to work for you.
HelloI posted recently on here about taking two cerazette pills instead of 1, I'm not sure how many you are on but someone else also mentioned the amount in two is equal to one of many other pills out there and is often recommended take 2 when bleeding with cerazette. I only started this on May 30th and it can take some time. Couple others said it did stop the bleeding. It might help at least until your laparoscopy. The main downside for me so far has been with mood so that side not so great.
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So sorry that you’re still having pain and unable to work!
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