The pill queries

Hi

My dr thought about 4 years ago that I had all the signs of endo (very heavy painful periods, diarrhoea sometimes with blood, severe pain in legs meaning I can't usually walk the first couple days, heart palpitations only during period, mouth ulcers)... 

So...

I was put on the single pill which was ok but didn't stop the bleeding...

I then went on the combined pill... Same problem where I kept spotting. I'd been told to stay on the pill continuously and never come off. My body disagreed!! 

During this time I had laposcopy - gp felt sure it was endo of the bowel (and that ovaries weren't affected)...she asked the surgeon to pay special attention to the bowel... The surgeon came out saying as the ovaries were clear he never checked the bowel... Grrr.. I was discharged and never seen by the team again (awful gyno team anyway- one male dr had the nerve to say 'maybe you just get PMT'-- I told him pmt doesn't usually result in blood out your backside!! Anyway...

I went into a different combined pill and alas it worked. The bleeding stopped, I could actually go back to work. Stomach issues still there but things were better until I started spotting again--I came off the pill a few times- once every 3 months my body seemed to decide I had to bleed. This was bearable BUT at the start of last year I had an awful experience where I came off the pill and had the worst pains ever. I ended up passing tissue- I assumed miscarriage.

6 months later it happened again- I kept it and took it to the dr- they sent it for testing and they think it's a decidial cast? They mentioned the pill could cause this perhaps? I went back on the pill and it happened again... Then this year I'm now spotting every month so have come off the pill once a month...and about 3 weeks ago after only being back on the pill about 3 weeks, the bleeding started and lo and behold another slightly unformed  decidual cast- this surprised me as I'd only been on the pill 3.5 weeks and was told these casts are caused by build up but there has been none this year as periods are coming regularly. 

As a side note every time I came off this pill I was getting bad headaches, sometimes blurred vision that came and went- was told it was hormonal headaches-this last time that I came off the pill tho the headache was worse, the period was shorter than usual and as it came to an end the headache became awful. I had I'm told a menstrual migraine- this is day 12 and the headache has eased but it's been horrible--11 pure days of significant pain-- I can't stand any light, nauseous if I move, head pounding. An emergency dr I saw says I should have come off pill sooner when headaches started (over a year ago!) they are saying treatment is too risky now so I must come off the pill. Apparently migraines like this can be a pre warning to a stroke? So fine I'm off the pill but all the old problems will now return.

I don't know what's wrong with me, I have no proof this is endo, no answers. Ultrasounds always fine. I've now changed Drs. The new dr is suggesting I go back on the single pill but I'm concerned these decidual casts will continue-- does anyone have experience of these? Surely 4 within a year isn't healthy? And does anyone know if the pill can cause massive migraines? I'm so unsure what to do. It's possible I may have an autoimmune illness which could be the main issue but I'm still unsure as no one knows. The Drs don't seem to know anything about decidual casts and say little. I'm hoping someone on here may know a bit about it or at least see if the experience will the pill is similar. I'm seriously considering a hysterectomy (I'm late 20's) as I can't keep living around my debilitating periods?

Thank you for any reply

14 Replies

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  • Sounds you're having an awful time and need some attention from a specialist. All I can really comment on is the migraines. I've suffered with them since I was a child and the pill is definitely linked to them. I went on the combined pill as a teenager and had terrible migraines and doctors said it was the oestrogen. I then went on the injection and then the progesterone only pill which I stayed on for 11 years. I had migraines in that time but nothing like as frequently as when I was on the combined pill x

  • Thank you for your reply. What helped your migraines if anything? 

  • Being on cerazette mini pill has helped, and I have learnt to recognise my symptoms and to take a migraleve a bit quickly. Sometimes I catch it in time, other times not so lucky. If you haven't tried the mini pill, it might be worth a try. Good luck with all your symptoms, hope you find the answers! X

  • hi flowflow. unfortunately u have to fight tooth and nail to get the right treatment. i was originally told i had stage 4 endo. i had an abdominal ultrasound which was clear but a transvaginal showed a large endometriotic cyst. i too was having symptoms suspicious of bowel endo. i went in for my lap and basically they hardly looked at anything and i was sent home saying that there was nothing. they just referred my care back to my gp. my symptoms worsened after the lap so after doing a bit of research i found myself a bsge endo specialist. they did an mri and it confirmed i had 3 endometriotic cysts, adenomyosis, and pelvic congestion syndrome. ive just had my second lap and yes they were right in the first place! i have severe stage 4 which ive now been advised further surgeries will follow along with a hyster. trust your instincts!! and when u go for your consultations always ask to see tge same person. i dont think my situation was helped by the number of different people i saw. it wasnt until the day of my op i actually saw my consultant first time round.  good luck x x

  • Thank you for this- so sorry to hear what you went through but I admit it's reassuring to know others have had laposcopies and been told all is fine without them properly looking. Can I ask what your symptoms were? And how did you get referred to a bcge gyno? Can I ask to be referred to one? 

  • i know what u mean. its strange finding comfort just knowing its not just happening to you. if u have a look on my profile you can have a look at the symptoms i have and was having at the time. if u look at the bsge list of specialist and find one which u would be happy going to then you need to ask your gp for a referral to that consultant in particular (not just that hospital) for a second opinion. u must say how bad your symptoms are and the detrimental effect it is having on your quality of life. ultimately u cant continue with symptoms like this.

  • Hello, I feel your pain 🙁

    I have had 'allergies' to the pill before that caused horrendously bad headache. I saw my doctor after the first couple of months and the removed them straight away and also said it can cause a stroke. 

    A few months back I was non-stop with the pill (for 3 months) and also passed what I can only assume was a cast, based on what the lovely people on here helped/advised. I had to stop the pill as it was causing me horrid acne and hot flushes. Personally, I found no pain relief while on the pill. 

    Currently recovering from my lap, a week ago today (I do not know where time goes!!) and in general I'm starting to feel great!! Still a bit of pain but hey I have got 3 new holes in my body!! 

    Keep fighting the doctors, push to see a specialist - it's not fair on any of us to be pushed from one person to the next without being taken seriously!! 

  • Hi thank you for your reply- are you off all pills now? If so how have they recommended to move forward with the difficulties? 

  • Hi, yes I'm totally off the pill now. 

    I guess everyone is different, and depends where you are in life. I'm personally at a time where I wouldn't say no to children if it happens but not everyone is at that stage. 

    My doctor recommended stopping after all the symptoms I was getting. I have always suffered with depression so at the age of 30 to be coming out in horrendous acne was bringing me down. 

    On Wednesday last week even my consultant said it was fine if I was fine with out. He offered to fit a coil while I was in surgery but understood what the plan was moving forward with my life. 

    I know a few people that are 100% allergic to the pill and can't take anything. But there are lots of types to try, just depends if they will make any difference and/or help with the pains. 

    I would go back to the doctors, maybe try something different and see how you get on, just watch out for any headaches again as you don't want to go back to the migraines. 

    Good luck, keep us posted. 

    X

  • Ultrasound does not show Endo.  The only accurate means of diagnosing Endo is a detailed and utterly thorough laparoscopy,  preferably done by a qualified and certified 'Endo Specialist' .  

    Most general  Gynaes are not specialised enough to recognise the various forms of endo, or to know how and where to look for the Endo that can collect in all sorts of hidden, tucked away and difficult to reach parts of the abdominal cavity!  They are certainly not specialised enough to 'surgically remove' most of this 'difficult to spot/access' Endo.  Yet surgical removal is needed, laser removal often just grows back. 

    There is a protocol in place that requires that women in your situation should be referred to 'Specialist Endo Centres'  Or BSGE centres, yet countless GPs and even Gynaes  do not follow this procedure.  

    Have a look at the posts on here by 'Lindle'  she is a fount of knowledge on 'Endo' and gives advice for your situation.  It is worth reading through many of her posts, for info on your condition and details of how to get yourself referred to a 'Specialist Centre'  I hope this helps and that you get some answers soon.

    Take care.

  • Thank you- I am relieved to hear General gynos don't have the knowledge- can I request to be referred to a specialist place? I will go take a look at posts- thank you 

  • Hi, It's Thursday now, and in today's 'Endo posts' on  here,  Lindle has replied to someone in a similar situation to you, also giving links to posts she has made that may be relevant.  Perhaps you could 'Private Message' her, to find out about the best 'Endo Centre/ Gynae'  in your area.

    Take care.

  • flowflow Hi. :) I am going to make a video reply for you to watch. It will be much easier for me to talk to you, rather than type all of this. I think you will really be happy to hear what I have to share. :) I think it is going to help you a lot! :) God bless. Here is the link to the video I made for you.... (This video may take an hour to upload onto youtube, but it will play for you after that, and it will play best on a high speed internet connection via a home computer best.)...

    (Also, I want to add that my periods are devastatingly painful and debilitating at times, so this is another reason I am opting for uterus removal, as mentioned in my video. I am currently waiting to a reply from the doctor about whether or not my uterus and Fallopian tubes being removed is going to affect my body's natural production of progesterone ( I have read that progesterone is produced in the ovaries, and since my doctor is attempting to keep mine, hopefully this will not be a problem). This is a very helpful article to read about hormones ( see link posted later in this message ). Our bodies's natural hormones work the way God intended, but artificial hormones that are man made are harmful to our bodies in many ways. ... Here is a link to that article: healthwatchersnews.com/2010... May the good Lord help all women everywhere to find a cure to all reproductive problems. Our bodies are the home of our spirits. God lives within us. This is our greatest gift we have on Earth, which we use to do everything good that we will ever accomplish in life. God please help us to find a cure for all of these things. I pray he helps all of us find the treatments that are best for each of our individual situations. Amen.

  • The video link doesn't work. A hysterectomy is not a cure for endo and indeed I think if the cure for endo was in the hands of a god then we would surely be cured by now? Shall we perhaps give a little credit to the scientists working tirelessly to find a cure and to the excision surgeons also devoting their lives to helping women with endo? We could go on forever wondering where god fits into the picture of allowing women to suffer so much and I personally feel this is not an appropriate platform for imposing religious views. 

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