Worried & In Pain

[Ashley-Jane]

Hi!

For as long as I can remember I have suffered with my periods. When in my late teens I used to wake up having bled out everywhere one my bed, eventually each month the pain getting worse and worse to the point where it was crippling, I couldn't even get out of bed I would just be curled up in a ball, even throwing up from the pain! I would know when it was coming as well because I would start to get mild cramps a couple days before due so I always knew when I was a couple days away from starting (usually started about 7 days before). Once I started taking the pill, I think my symptoms started getting slightly better even though I would still feel very sluggish and experience the cramps during the first few days.

I stopped taking the pill just over a year ago and noticed that my cycle was becoming very inconsistent.. from being between 7 - 10 days late to the cycle itself being different, they started getting very short and a lot lighter which had never been the case, and it usually started with the 1st day the blood being very dark, practically brown. I went to see the doctors but they said this would have been caused to my body getting back into the normal cycle after being on the pill and said they would do a scan to check anyway. The scan revealed an ovarian cyst, but nothing else was done following this. My period still continue to be very inconsistent and I find myself experience stabbing / throbbing pains in my lower right pelvis. A 2nd ultrascan revealed a bloody cyst which they suspect to be Endometriosis, however I have to wait a couple weeks again before getting another scan. I am very nervous as even though all my symptoms seem to relate to this, and makes a lot of sense and it's in a way nice to finally have an explanation as to why I suffer so badly. I'm really worried how this will continue to affect me going forward, especially when it comes to starting a family. What has people's experiances been with this? I'm 25 nearly 26 and currently saving to buy a house and living with my inlaws in the meantime. But is starting a family something that I would have to start thinking about sooner rather than later as it seems that this can cause quite a few problems when it comes to conceiving? Has anyone experienced their symptoms getting worse or have similar? What do you find is the best way to deal with this??

[Nicolahunny]

I was quite lucky I managed to become pregnant with endometriosis but pregnancy helped but the problem is endo can return once u have had a baby but I was 14 months of lower left sided pelvic pain always getting worse week leading up to my period and even on my period I'm having to take lot of medication to stop the pain and even on tablets to slow bleeding as like itself I end up flooding the bed my clothes the only way to know for sure if ur symptoms are endo related which by ur symptoms they do sound like endo but I would go back to ur gp and ask them to refer u to gynaecolgy as only to know for sure that u have endo is to give you a laprostopy I was dignosed  last year with endo on my womb and aheadions on my pouch of Douglas which glued it to my womb scans can't show endo but they can show if the cysts are endo but I wish u the best of luck and keep ur chin up xc

[Ashley-Jane in reply to Nicolahunny]

Than you for the advice. My worst fear is not being able to conceive so I am hoping the doctor will be understanding and do what needs to be done to see whether or not this is something I need to start thinking about now rather than later. Do doctors generally listen if you ask them to refer you or if you ask for a laproscopy as I don't want to sound demanding to the point where they won't want to do what needs to be done to help? x

[Nicolahunny in reply to Ashley-Jane]

The best thing u can do is find a doctor that has a good knowledge of gynaecology conditions and I found I had to see a few before I got refered they won't normally refer u for a laprostopy but gynaecology wanted to put me on zoladex injection and I refused I told the gynaecologist that I wanted the laprostopy to c if I had endo but zoladex injections is not a option for woman like yourself want to have a family so if ur doctor refers u to gynaecolgy tell gynaecolgy that u want the laprostopy and if endo is found and depends on were they find it they would Probarly advise u to try as after a year endo can come back but durning my lap they put dye through my tubes to see if they are blocked but mine were ok but tell them what u want and I'm sure they would tell u what ur options would be after that because I want more children my treatment options are limited but I know that they let u try for a year to fall pregnant but if nothing had happened they would do infertility investagstion which Iv already had but because I have one son I'm not entitled to ivf on nhs but I know that people that have endo and haven't fell pregnant would get two cycles on the nhs but the waiting list is long but different hospitals have different policy's so hopefully they would refer u right away depending on what the laprostopy shows as I got refered after I had my laprostopy I wish u all the best and goodluck 

[JadeG]

Hey. Make sure you push for a laparoscopy so then they can see if it definitely is endo. 

In regards to getting pregnant, I came off the pill 18 months ago and nothing has happened as yet. I was only recently diagnosed (November). If you do get the diagnosis I would definitely recommend trying for a baby as soon as your ready too x

[Ashley-Jane in reply to JadeG]

Thanks for your reply. I am going to ask I'm just hoping that they don't fight me on it as I don't want to sound demanding. Did you ask your doctor for yours? How long does it take to recover? My Husband and I have agreed that once we get our own place ( we are currently saving to buy as we have had to move into our inlaws the for time being) we are going to start trying as we don't know how long it's going to take and we dont want to risk waiting and then finding out that it would be impossible.. x

[JadeG in reply to Ashley-Jane]

No I didn't ask for mine, it had been going on for years. Bad periods, bleeding during and after sex and it was also painful, then I came off the pill and obviously nothing happened. 

I kept being told it was because I had a tilted cervix but I knew that wasn't right! Then I saw a new doctor one day who sent me right to gynaecology and after that first appointment with them they put me forward for one. If I hadn't heard f kept going back and forth though I don't think it would have happened! 

The operation itself is fine, the worst bit I found afterwards was the bruising was quite painful (I bruise easily anyway) and I was just exhausted all the time. I thought I would have a couple of days off work and that would be it. It ended up being two weeks! You can't rush it though, need to think about yourself! Also like another lady said get them to put the dye through your tubes at the same time. 

Make sure you keep pushing for someone to do something to help you, I find mefanemic acid helps take the edge off the pain of my period. 

Good luck! 

X 

[applebird]

Hi, really related to your post, got period at 10 throwing up every month and unable to move, finally diagnosed at 25. Since then I've had an investigative lap and 3 further surgeries, 2 major. I wasn't ready for a family at 25 for a baby so they put me on the pill and also had 2 rounds of prostap injections to stop periods. We had to then put off ttc due to surgeries needed etc - finally preg at 30 after 2 mc, had anticipated needing ivf as docs were very negative but got preg quite easily each time. This could be due to the treatment I had, we also threw everything we had at it - bbt tracking, both off alcohol and taking pregnacare preconception multivitamins, fertility acupuncture etc., I also lost weight and started the Endo diet as both of these lifestyle changes can really help Endo symptoms (see Endo resolved website).

The advice I was given was def to not leave ttc beyond age 30, which under the circumstances was very sensible. If you're in a stable relationship, have a job etc. then I'd have the talk with your hubby. 

Agree with poster above you need to push for a lap as having any Endo removed will both help your pain and increase your chance of success in ttc. Can also attest to the fact that pregnancy helps Endo. 

[Ashley-Jane in reply to applebird]

Thank you for your reply, it's sort of assuring to hear that other people suffer like I do and are going through the same thing. I will ask my doctor about the lap surgery as that seems to be the common advice in order to be sure. I just don't want to sound demanding as I know doctors tend to hate people 'self diagnosing' even though on my last scan they did put suspected endo. My husband and I have agreed that once we are a place of our own (had to move in with my inlaws due to problems in our apartment and are currently saving to buy a house) that we would start trying as we don't know how long it would take and that we would rather try now instead of wait and there be more problems as that would be devastating. x

[applebird in reply to Ashley-Jane]

You're completely right - I know you might have maybe wanted a bit more time with just you two, but paying heed to the warnings with Endo is a good idea. 

Don't worry about being 'demanding' - you pay taxes therefore you are entitled to medical care. Getting a medical degree doesn't make a person 'God' - though some docs may like to think that! Anyone decent will listen to your concerns and want to help. 

Just say about the symptoms you've experienced and how Endo was suspected on the scan. Say that you would like to try for a baby and would want any disease removed via laparoscopy beforehand. It's a simple request and very sensible.

Good luck with everything xx