I have been diagnosed with stage 4 and am currently lost in the nhs system struggling to find help and advice. My first gyno advised me to continue my pill (microgynon) with only 3 breaks a year rather than 1 a month....I now have a new gyno who has advised I should take it continuous without a break to stop the endo from being able to get any worse.
I have been doing this for 6 months and I'm gradually spotting more and getting more pain around the time my period should have been, I've also noticed I'm very hormonal all the time and I'm worried that not only am I effecting my way of life by makinging myself so hormonal all the time but my anxiety runs wild because I feel like my endo is still getting worse?!
I am currently trying to be reffered to a specialist but in the meantime could really do with some help
Thanks in advance xxx
Written by
SJW88
To view profiles and participate in discussions please or .
Hey! I am finally in the process of getting diagnosed through a lapacrospy. I really struggled with diffrent advice over the years from diffrent doctors and gynaecologists. Honistly I would recommend going private with a good gynaecologist. I know it’s expensive but I find that my gynaecologist listens has time for me and adapts the treatment around me. The emotional fight with GP’s and specialists through the nhs service was too much for me to conuine to do. As like with you they were recommending diffrent things and I felt as though I was being passed around too much. With some private hospitals you can chose your gynaecologist and some specialise in Endo. Hope this helps.
Thank you ...It's a horrible feeling, it's like your never moving forward. Is it expensive to go private? I don't have a scheme through work or anything. Xxx
I would suggest trying a different method of contraception, the pill is only really meant to work on a monthly basis so taking it continually can excentuate your endo/ period pains. I found after trying many different types of pill that the depo injection worked best for keeping my endo under control. You have a 3 month roughly turn over time and after a couple any spotting or periods should diminish.
I had stage 4 endo with an awful lot of lesions connecting my bladder and womb to my abdominal wall etc and i found that the depo work the best for the longest.
Other than a laparoscopy the only alternative to managing endo is with hormones so the likes of these contraceptions so it’s just a case of trying what works best for you to manage the symptoms. I was and still am very anti pain meds because I didn’t want to have to continually take them and more often than not found they didn’t work. I have codine to take for when it’s unbearable so it may be worth asking your gp for something like this aswell.
Other to all of this my advice would be don’t let it drag you down and affect your life to much. There is so much negativity on pages like this and I get why it’s a lot of people mostly struggling but don’t let it control your life, only you can do that. Endo never goes away which is the hardest part. Whether you have some removed or manage it, it is a chronic illness so stay strong, it gets better but just don’t let it define you and your life.
Thankyou, I will enquire about the injection. The pill just isn't helping at all....I always try to stay so positive, I've started the gym and really focused my time there and I'm now in amazing shape and this is what I try and focus my energy on but I have days where I feel like I have no1 that understands and that I'm pretty alone with it all. But I know that's my hormones....I have never been overly hormonal before so I really need to sort that because when I'm on top I'm really happy but after a hormonal burst it can kick me for weeks xxx
Hiya,
I also have Stage 4 Endometriosis and currently have the Mirena Coil in, and I am also taking a combined pill (Levest) back to back like you have been advised to. I’m sorry you’re feeling lost in the system but I just wanted to reassure you that the treatment that’s been suggested is normal. Hope you get an appointment soon. Waiting in pain, not knowing what’s going on inside is awful.... I’m always wondering that myself. Let me know how you get on 😊
I just don't feel the pill is working for me....the pain is graduliy getting worse which makes me paranoid that the endo is getting worse . Why the coil at the same time? Xxx
Ahh I see, i don't get the pain as bad but still get pains right up into my chest when it would usually be the time for me to come off the pill for a break
Hello
I have stage 4 Endometriosis, Hypothyroidism and Hashimoto's. I used to be on the pill, but made an active decision to come off due to the thyroid diseases.
I would recommend taking vitamins such as:
Vitamin B complex - The B vitamin family is also vital in the conversion of the important fatty acid GLA. GLA supports the production of anti-inflammatory mediators that can reduce the pain-associated inflammation in endometriosis and relax the muscles
Milk thistle – this herb contains the antioxidant silymarin, repairs the cells in your liver and protects cells from damage (thereby regenerating the strength of the liver to detox the body of excess estrogen), and it is anti-inflammatory. So, this is one powerful herb for endometriosis!
Vitamin E - This is an important vitamin in endometriosis because it has been shown to relieve menstrual cramps in 70 percent of women within two menstrual cycles.
Vitamin C - is one of the most important vitamins for immune function, and it is crucial that your immune system is operating at optimum level so that your body can recognise and destroy endometrial patches as they occur. Bioflavonoids are helpful with pain occurring around the time of your period because they help to relax smooth muscle and to prevent inflammation.
"Researchers have discovered that women given a high intake of the vitamins especially of Vitamin E and C suffer far fewer symptoms than a placebo group."
Other vitamins that have been recommend, but I have not personally tried are:
Evening Primrose Oil and Magnesium
Diet
If taking milk with anything, switch to unhomogenized. This can be brought from Tesco, Waitrose and now at Morrison's. Asda has yet to catch up.
Cut down of caffeine and alcohol or eliminate altogether and the same goes for any red meat.
Try and make 80% of the food you eat organic and follow a Mediterranean diet high on vegetables and fruit.
That is so helpfull! I didn't realise they had such an impact. I will certainly try it....I read somewhere else actually about milk? Is it just milk or dairy products? Thank you so much for that information that is so so helpful! Xxx
I still have some dairy (organic butter and occasional organic yoghurt) and use the unhomogenized milk for my coffee, but, I know some people who have cut out dairy altogether.
I really think it is a personal preference / choice.
I’m so sorry your going through this. Unfortunately this seems to be the norm with Endometriosis sufferers. However you are not alone and this site has a really lovely bunch of people who can help and support you. I’ve read the reply’s and you have had some really good advice. The only thing I was going to add to it was a couple of books I really think will help you. Especially as you are at the start of your journey. They helped me a lot. Especially with my anxiety and self doubt about my symptoms. “The Doctor will see you now. . . . Recognising and treating Endometriosis” by Tamer Seckin And “Get your life back. The Endometriosis Health & Diet Program” by Dr Andrew S, Cook and Danielle Cook.
Both you can buy used from Amazon. Hope you find they help. And please remember you are not alone. Hang in there. You will get through this. All the best Claire xx
I will have a look at these now . I love to read....I think that's what it is, just gets a little on top of me every now and again and when you have no one that understands...including your Dr it makes it even more isolating. Thank you so much for your help xxx
I’m really pleased. I think you will get a lot from the books. They will give you the strength and guidance to get the correct help that you need. Let me know what you think. And please remember you are not alone and this is not in your head. I’m here for you if I can help in anyway. Take care Lv Claire xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
...It's a horrible feeling, it's like your never moving forward. Is it expensive to go private? I don't have a scheme through work or anything. Xxx
Diagnostic Laparoscopy
Newly Diagnosed 
Migraines. Also pins and needles in hands and right buttox and pain down left thigh from hip as well? help!
Im new please help: Is it ok to go to a&e for endometriosis pain?
I'm so tired of it all :-( please help x
