After ten years of being ignored and dismissed by doctors, i was finally permitted to have a laparoscopy and was officially diagnosed with endometriosis in March of this year. Apparently the endo was removed, but unfortunately has not made any difference to my pain. My consultant basically told me that i had to try contraception such as the pill, injection, implant ect as they would slow the endo growth down, but any problems to go to my GP and ask for a referral to a specialist.
I've been very reluctant to go back on the pill as i had problems with it when i first tried it at sixteen but was talked into trying it again. After i started to take it, my pain actually worsened and my moods went incredibly low. I spoke to the GP about a referral, but just like all the others, she was rude and dismissive, and told me that it made no sense that the pill i was on was making things worse. I've read a lot of conflicting information, as the GP is telling me that contraception is the only treatment for endo and that i need to give it more time, but i've read a lot about contraception merely being a bandaid for the problem and that there is no scientific evidence that it slows the growth down at all. Does anyone have any thoughts/experience on the matter?
If i'm being honest, I've struggled hugely since being diagnosed, worrying about what my future might look like and if things will only get worse. I feel like GPs don't know what they're talking about half the time and are simply reeling off 'text book' answers with no understanding of how the illness effects different people differently, and it makes it very hard knowing who to trust in regards to any kind of future management of the problem. With my moods being so low a lot of the time because of all this, I'm worried about continuing to try the different type of hormonal contraception in fear of them just making things worse.
I'm not sure if anyone can relate, but it would be good to hear from people in the same situation as i don't personally know anyone with this illness, and it leaves me feeling very isolated and alone.
Thank you! <3
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peppermintspring
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Hi, I too was in this position - still am I guess.
I went with trying the pill, told to try it for 3 months before a review with gynae, couldn’t get an appointment, so ended up doing 6 months - no improvements in my symptoms, so had the coil fitted ( previous bad experience but thought I should jump through the hoops again) 5 months in & yes bleeding is ALOT lighter but pain was the main issue, so wasn’t helping. Have now started a 3 month course of Zoladex, so see if that reduces the pain, which I feel is from one ovary. Only a week into this treatment so waiting to see if it makes a difference. Only trouble is, they said it would only be a 3 month treatment - so if it works, I’m not sure what the next step is.
Hi lovely so sorry to hear this. I don't have advice but just wanted to say reading your story is like a mirror image of mine, 11 years to finally get a laparoscopy in April, endo removed (apart from an endometriota on my ovary) and the pain is if anything worse than before. Was discharged and told well we haven't really done anything for your pain. I didn't want to go on contraception as am TTC but am finding all of this such a mental struggle - have booked a gp appointment for next week to see if I can get a referral but I'm not holding out hope. I'm so angry us women get treated this way. Sending you my thoughts as we adjust to our new normal x
Morning, I agree whole heartedly. I think many women on here will have been put on something that has made their endo worse. My doctor put me on progestin (synthetic progesterone) and I went completely nuts. My issue is hemorrhaging. I'm sat here now taking tranexamic acid because the zoladex implant ran out last week and I don't get it until Friday. There is no cure for endo and the medical profession is only now realising the scale of it. 10% of women is the same as diabetes but with hardly any data or research GPs don't know what to do. This is why women are turning to Facebook and getting private tests done because we need answers and are sick of the waiting times and being dismissed. A woman on here reported that her doctor said endometriosis was 'trendy' at the moment. This is what we are up against. My gyno has no clue about women's hormones and readily admits this. We need to keep pushing and questioning doctors regarding our treatment, and we definitely need to start at a point where we need to consider that we know as much as them about this condition. The good news is that lifestyle changes help endometriosis too so we can support ourselves there. When I see all these women having surgery for a diagnosis I'm relieved at how far we have come. I'm 51 and the way I found out was a failed hysterectomy as it's all fused together now. Good luck xx
Hi Hun, I am sorry that you have to go through it all. It sounds like you have a lot on your plate just now.My story is somehow similar - I used to take pills when I was younger as a contraceptive. I didn't feel very well on them and stopped after some time. As a part of the endo diagnosis I was on the pill for 6 months and it was the worst time of my life - the side effects were horrendous and I just refused to take them any longer. I was constantly in the worst pain I ever experienced, my mental health took a dip, my sex drive didn't exist anymore, the list goes on and on! My gynae was really disappointed and tried to force me into continuing to take them, but I set my ground. I underwent my laparoscopy as a result (failed hormonal treatment is one of the indications for the lap). I was asked about Mirena, but again I refused knowing that hormonal treatment made everything wrong previously. My laparoscopy confirmed DIE and it changed my periods - they are not that heavy anymore, but it didn't do much for the pain. At this time I decided to focus on lifestyle changes. I read every medical research paper I could find online and came up with the plan. I started implementing changes to my lifestyle around Christmas and I am both pain and meds free at this point. On occasional flare up I only use my TENS machine (currently on as I write this) and green tea with ginger. I can write some more about the specifics of what o did if you are interested? 😊
No problem at all, here it comes:I started eating whole foods plant based diet. I was vegan previous to my diagnosis, but after some research I changed my diet completely - I eliminated all processed sugar and fat, including oil, alcohol, caffeine, soda drinks and so on. There is a fantastic book about the subject "How not to die" by Dr Greger that I can't recommend high enough. He explains the importance of the diet and how it affects our day to day life in a really accessible language and backed by MANY research. I also eliminated gluten, as it was worsening my symptoms. I started doing 30 minutes of yoga everyday. And I mean 30 minutes every single day. It did hurt when I started, especially when my fatigue was kicking in, but it reduced my PMS to a fraction of what it was previously. I don't get back and hip pain anymore!
The next thing was to remove or reduce all endocrine disruptors from my house. Many things had to go - everything with added fragrance, so scented candles, air fresheners, fabric softeners, perfume; anything foamy with SLS, so convencional beauty products, shampoo, shower gel, even toothpaste were next on my list. Later I also looked into the cleaning cupboard, from where I replaced: washing powder, fabric softener, dish washing liquid, anything with bleach etc. it took months to find all the replacements!
The next step was adding things - I found a research that green tea with ginger significantly reduces menstrual pain from day 1 and it keeps giving better results the more it is used. The recommended dose it 3 cups of green tea with a 1/4 of a teaspoon of ginger, 3 times a day. You don't have to drink it everyday, but you can start on day 1 of your pms. I swear by this! After 5 months of drinking the stuff regularly my pain levels are lower than ever. Seaweed is also well known for helping with painful menstruation, so I introduced sushi Fridays. We all love in the household and it makes me feel better.
After all of that I realised that my endometriosis is going to stay with me forever. I can do all the adjustments in the world, but sometimes it can take a toll on my mental health - I finally allowed myself to feel worse on some days and just let go. I use my TENS on some days and take it easier. I openly talk about my diagnosis with friends, family and in the workplace. While I don't want to be identified through endo lense, it is a part of my life now. I found that speaking openly about what I am going through makes it easier to bare. It turns out that there are many more people than I expect who also suffer from endometriosis, but they didn't know anyone with the diagnosis so assumed there is noone around them either. Around 1 in every 10 women suffer from endometriosis. If you know more than 10 women chances are there is someone else suffering alone. 🤍
I know it sounds like a lot, but I swear by the above. I know we are all different and there is no cure for endo, but I really believe that the sum of all the tiny changes ads up and makes all the difference. I have never been better in my life - my pain levels are low, I don't deal with side effects of any medication, as I don't take them, and I found a good support network both over here and by being open about my diagnosis and struggles. It still sucks to have endometriosis, but life now is way better than it's been in years.
I hope this helps, but please let me know if you have some more questions. I am more than happy to share everything I tried. 🤍
Hi!Your experience is much like the one of every person with endo. So don't feel alone! I also got endo removed but after few months the pain started again. So they prescribed me progesterone only pill. That gave me persistent nausea and low mood. So I went to a normal pill. The first 3 to 4 months were not much better. But then it got better. Some months it is good, some is worse. It really can change from one month to the other, even if the pill and the hormones are the same. I guess the environment also plays a role. Then in November 2023 I stopped it because I was still in pain despite the pill. Since then no period. And they have been the best months of my recent life. For me going off the pill and bot having any peruod is the best way to be symptoms free. But of course you might be one of those that as soon as you get off the pill you get our period and pain back.
Unfortunately you're right, there's not much else you can do except antinflammatory diet and gentle exercise. But those are for pain management. They don't solve anything. Same as the pill by the end of the day, as there is no cure yet.
What I can tell you from my experience and what I read on several forums is that you have to keep trying pills. They really differ in the concentration of the hormones and their estrogen/progesteron balance, so they can have very different effects on you. You need to try each for at least 3 months. Which I know can be a long time if you're in pain. And I hate when the doctors tell me. But I'm afraid it's true. Ask others about their experience with the pull and ask them which kind worked for them.
You have to ask your GP of course before trying any of them because they know if you can have any issues in taking them.
I understand what you are going through. I have had unexplained pain (going into an and e a few times a year too) for 9 years or so. I’ve just been diagnosed with Endo which they’ve said is quite bad. I have surgery booked at the end of July so quite soon. I’ve spoken to a lot of people and surgery seems to help some but not all - but hoping they can get rid of these cysts as they are killing me and really impacting on my quality of life right now. I’ve been put on the mini pill by the gyneo consultant I saw and it has helped a bit with symptoms and the pain, I’m scared of taking that zolterex stuff sounds absolutely awful so think I’ll just stick on the pill for now.. *sigh* I’m so upset at what women go through with this and how many years I was just dismissed by gps who said I had ibs… if they had actually referred me onto the right person sooner, my Endo might not be this bad there is so much our medical profession needs to improve upon in relation to this disease.. it seems to me that finding a specialist in Endo is the key to getting the best treatment in respect to all of this! I honestly wouldn’t be taking the pill if I could but don’t think I I have any other option right now and it has helped for the moment! Good luck!
Hi, i'm really sorry your struggling so much and i hope it does get better for you.
I can relate to not coping with being diagnosed, gps not knowing a thing and being told contraception is the only way.
I was told when being diagnosed i probably wouldn't have kids. But if i did it would solve my problem too. I was lucky enough to have my son sept last year. But its got worse since, got told to go back on the pill and i was reffered to gynae. Gynae came back after 4 months saying i needed to be on the pill longer and discharged me without even seeing me . My gps managed to get me back on the referral which has now been a 4month wait again. Gps only pushed for it because i was going more or less everyweek in agony and multiple a&e trips. Before that they were implying i was addicted to cocodamol because 30 tablets wouldnt last me a month (if you can have up to 8 a day...makes total sense🫠).
Anyway my point is i agree and whole heartedly empathise with you. In my experience the pill has done nothing to "control" symptoms. I only use it so ik when i will come on and i can taylor it to work around my work shifts.
I'm also a mental health nurse, and if its making you that unhappy and low get the hell off it!! Don't wait till the gps tell you to, you know your body and when you feel low your pain is probably going to feel worse too. Unfortunately i've learnt we have to advocate ourselves and put our foot down to make them listen.
I dont know if that helps in any way but your not alone, and hopefully you will have that one gp/ specialist that does listen.
I got my mirena coil fitted at my local Sexual Health Clinic, no GP. They were brilliant and it was a proper Gynaecologist consultant and they fitted the coil better than the GP as they used a scanner to make sure it was positioned correctly. The last one was done by GP and I had hideous pain for 2.5 yrs.
The clinic should be willing talk through options better suited to you and not rush you out the door.
What you've shared about how your GP has handled you as a patient infuriates me to my core. As does reading other women's accounts in the comments of their GPs/gynaes mishandling their symptoms and trying to force them on the pill. What you've experienced from your GP warrants a formal complaint. She is wrong to tell you that the pill shouldn't be making your symptoms worse and is wrong to claim that it is the only treatment for endometriosis. The pill isn't effective on everyone with endometriosis. You need to be seen by an endo specialist & have every right to be referred to one. If she refuses, change your GP. Excision surgery for endometriosis is the best form of treatment. You shouldn't be denied it
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there is so much our medical profession needs to improve upon in relation to this disease.. it seems to me that finding a specialist in Endo is the key to getting the best treatment in respect to all of this! I honestly wouldn’t be taking the pill if I could but don’t think I I have any other option right now and it has helped for the moment! Good luck! 
Contraception
Given up on contraception
Alternatives to hormonal contraception 
Advice about treatment from NHS
Endometriosis and contraception
