Do you have to have birth control

Hey ladies,

I hope everyone is ok. I've now got my first appointment with the gynae mid September (still a bit nervvy, not going to lie) but apart from having to go on birth control/ hormone treatment is there anything else they will do. I'm not a fan of playing with hormones and I'd rather not go down that route.

Thanks for your time


13 Replies

  • You may be offered a laparoscopy, a surgery to remove your endometriosis. However it is likely that you would be offered some form of hormone treatment either before or after your surgery. This should be considered unless you are trying to conceive. My advice would be to try the hormone treatments to see how they affect you, they may be very beneficial. What are your current symptoms? X

  • Constant pelvic and back pain that radiates down my left leg. A pull/tug sensation when going to the loo, odd period blood(sorry to be graphic) etc had it for over two years and gradually got worse after having colopscopy.

    I'm currently on naproxen and ibuprofen to help the pain. until I've seen the gynaecologist. Birth control scares cause of the side effects. Acne, weight gain, depression, being in your system for years after stopping taking it.... Don't really want any of that :/ maybe I'm being a hypercondriate. Lol. I dunno. Thank you for your reply :) x

  • as has been said, the hormone treatments can be really helpful, and if you have surgery and don't use the hormone treatments afterwards, the Endo will grow back, and you could be back to square one within the space of a few months. I have tried just about everything now - mirena, decapeptyl, norethisterone and am currently on cerazette. However my disease is really severe and a few spots and a bit of weight gain are really the lesser of two evils. Rather that than trips to a&e. The other alternative is that you can opt to just try and manage your pain with painkillers. It very much depends on what stage you are at with the disease and what will give you the best quality of life.

  • Thank you for sharing I'm sorry to hear you are at a severe stage :(

    It's more the depression that scares me, I have history of being bulimic so the idea of gaining weight would spike that, it's one of those things that stays with you :/ I'm sure the doctors will help. I'm just really nervous. Thank you again for your words of advise :) look after yourself :)

  • I was really anxious too - I'm in my late 30's now but had abandoned the pill in my early 20's because it basically made me fat and bonkers, and had never intended to take that sort of drug again. Everything you read about them online (particularly the gnrh analogues) is scary. But they've been OK. I had an absolutely hellish year last year while I was trying to get diagnosed and this year has been much better because of these drugs.

    I'm sure you know this, but make sure you tell the consultant about your history so they are informed when suggesting drug treatments. Best of luck. x.

  • I wouldn't write off all birth control, there are so many types you might find one that works for you. I've been put on a progesterone only pill whilst waiting for my lap. It's helped me go from pain all the time to only 10 days a month with no side effects.

    hope it goes well at your appointment x

  • hi I diagnosed mounth ago. i need advice please. what is visanne? how take this drug?

  • At my first appointment I was told to use birth control (microgynon) to stop my periods and was offered a ultrasound/transvaginal scan to check my ovaries and womb. I was told that they wouldn't offer me a lap as it would be treated by the pill inevitably anyway so she was cutting out the middle man! Be as pushy as you can to get what you need from your gynaecologist, especially considering the wait for appointments is usually several months.

    I hope everything goes okay! Good luck! X

  • Hormone treatments can be useful and awful in equal measure . But it's worth trying as once you have the endo removed it comes back as I was off all hormone treatment for ten years and eventually this is when the endo developed badly needing removal .

    Key things to remember is some medical professionals no little or nothing about the condition !!!!

    You have to be proactive and so your own research

    What works for some doesn't for others we are all individuals and treatment should be holistic !

    I tried the cheap run of the mill pills. Microgynon, cilest, marvalon cerazette all useless for me !

    Had mirena for 12mths side effects too bad had it removed !

    I'm now on Qlaira having seen a private specialist it's available on NHS your GP can prescribe it but they won't know about it !

    I still feel unwell for about 4 days a month but that's progress and little or no bleeding

    I hope this helps you 😀

  • Hi Sammy

    know how you are feeling am skinny with head issues good luck with appt. Make sure you have researched hormone treatment i cant do them as feel worse ..but my endo is back bcos i refused this after excision 2yrs ago..and have gynea in a mnths time. Mb the mirena coil is an option but still hormones. Thinking the lowest hormone pill you can get less traumatic if we were in America we could order it on line heard mention of lanvil is good for some and researching anither treatment called quaira..mentioned on this site. Be pushy and well informed as they will try and railroad you into tried and tested treatments but wont understand your head problems with weight..i do so good luck hon x

  • I was on the combined pull both before and after the laparoscopy and my symptoms never improved. On top of that, the pill made me seriously depressed and anxious.

    I don't use it anymore. I'm waiting for my gynae to decide on whether an excision surgery is the best thing.

    I'm refusing any furtherhormone treatments ever again based on how it changed my personality (and body shape) and because we want to start trying for a baby in the next year or so and I want to be in my best condition possible.

  • I'm very sorry to hear that it caused depression. But I wish you all the best with trying for a baby. Congratulations, that's super exciting :) did they say anything when you refused the pill? I'm just concerned they may not want to know, if I refuse a form of treatment :/ Thank you, all. For your advise experiences. I'm taking note of everything you are all explaining. Thank you again xxx

  • Hi, I'm 37 and was finally diagnosed with severe endo in April after suffering since I was about 15. I first went on the pill at 16 to try and help the pain. It did a bit but it was still bad. I had excruciating pain when going to the toilet, it was awful and I'd be doubled over in pain during the month. But I have to say, since being put on cerazette two years ago, it has helped more. Thinking about it, I did put on weight but I think this was more to me being in a new relationship and getting all happy if that makes sense. Since having my baby almost 4 years ago I started getting more symptoms, pain every time I sat down. Period pains, ovulation pains...pains just all the time. The pain duing my periods was so bad that I couldn't stand up straight,I used to say it felt like somone was tightly holding on to my ovaries and twisting them up tight - I couldn't straighten up. Pain during sex, I had about 16 UTIs in 14 months which they kept saying wasn't related until finally in July the gynaeno. said it WAS related! So what I'm saying is, the pill did help with managing the pain - hence it taking so long to be diagnosed. It just got too bad recently. Hope you manage to find something that works for you. Good luck x

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