New Here - Nervous/Worried/Possible Endometriosis - Any Advice Please! Gynaecologist Questions ?!

[hayleyworried]

Hey everyone - feel abit nervous writing here as I haven't actually been to the Gynecologist yet.

I will try give you a brief history of my issues - if anyone has had the same please please could you let me know as non of my friends/family have any issues and end up feeling really alone and lost.

Basically I started my periods really young about 12, I had really heavy periods from the start lasting around 7-10 days, I would bleed through tampons, pads and my clothes after half an hour and I would be in so much pain that I sometimes couldn't go to school. This led me going on the pill at age 13 to help control it.

From age 13-16 I was fine on the pill, then I had the implant inserted. I didn't have a period then for 2 years, then one day my stomach swelled up and my period started for 3 months, very heavy and my stomach was so so bloated uncomfortable. They replaced the implant with another one about a month into the bleeding, this obviously did nothing. They then made me take the pill for 3 months before they would remove the second implant!! Double the hormones made me crazy and gain a lot of weight!!

After about 6months on this pill, the month long heavy periods started again - back to Drs i went and got put on another pill - this happened on repeat until last March - where after 13 pills in total - they finally took me off!!!!

I had a ruptured ovarian cyst in 2012 which led me to have internal/external/kidney scans and I ended up going to the gynaecologist but before they removed it it had gone. Iv also had these same scans a few other times where I have had cysts show up.

I ended up in a&e in 2014 with insanely heavy bleeding as they thought I had the same symptoms of a miscarriage - I wasn't.

Since coming off the pill in March the first few months seemed to go okay - it arrives on time lasted 6 days and was much lighter and less painful then I was used to. Then September came around and everything changed again!!!

From night before my period is due - like clockwork I start feeling very bloated and uncomfortable, which leads to me being awake from 1am pacing the house in pain, hot water bottle and tablets, laying in the bath for hours unable to sleep. My bloating is insane, I cant empty my bowels and I cant stand the pressure on my stomach if I drink, and I feel too nauseous to eat! However the bleeding is a lot lot lot less then ever before with most of it being blood clots. The first month I though I must just have another cyst so didnt do anything about it - but the next month it was still there so rang to book in for Drs - I couldnt get in until December!!! Novembers period came and I was so poorly I ended up in A&E after 5 hours and no help I left with codeine, this has helped make the pain more manageable - but still cant concentrate enough at work. When I finally got to the Drs she booked me in for all the scans at hospital again. I had another period in this time - same thing again!!!

The hospital scans were 2 weeks ago so I had Drs Monday to discuss results. No cysts were found on my ovaries but one on my kidneys - not sure if this is related. This is when the Dr expressed her worry that I might have endometriosis and is referring me to the gynaecologist.

After so many years of problems I just want an answer. I know its going to be weeks before I get an appointment but my period is due again this week and Im literally dreading it - even with a cupboard full of codeine!

I know everyone's is different but if you had similar problems please could you respond?

Also if anyone has any advice with what questions for the Gyno that would be so so appreciated.

Thank you for your help/advice/support in advance!

Hayley xx

[BeckyG1990]

Hey!

I'm not sure how much help i'll be but I know how you are feeling so i'll try!

I was told last week that I've almost definitely got Endo, although having a scan to see what's going on this month. Unfortunately, it generally seems like it takes years to diagnose because it is something that can only been seen and bloods don't pick these things up!

I was in hospital a few years ago with chronic pain, then I came on and the pain went, then randomly returned often.

I don't personally have the uncontrollable bleeding but I seem to have all of the other symptoms so I guess everyone is totally different. That also means that it might not be as bad as you think.

I'm certain you already have but be so pushy with docs. I've now gone private to get the initial ball rolling, however I know that I can't keep this up! I've just got into habit of finding things that are comforting to get through the pain.

The fact you are having scans is really positive! We all do it but try not to assume the worst.

[hayleyworried in reply to BeckyG1990]

Thank you so much for responding! Im starting to think what if it isnt Endo....then what on earth is it! xx

[KatieJBW]

Hey Hayley, I have had similar period issues, varying over the years like you (heavy bleeding but not as bad as you, my main issues have always been long and frequent periods, so that at some point I was almost never off my period). I've also had similar bloating symptoms, although I haven't been as poorly as you, ending up in A & E etc. Sorry to hear you went through all that I first used the mini pill (I'm restricted in contraception choice due to migraines) prescribed by my GP, then a while later was referred to the gyno. Endometriosis was not mentioned on my first gyno referral, I was put on the depo injection. Long story short, that worked miracles at first and then became disastrous. I went back to the GP, and got a referral for a pelvic ultrasound. It was actually a nurse at the clinic where I got my injections who referred me for the second time to the gyno, after I asked her for advice and ended up breaking down in tears because I'd been on my period so long! Ultrasound showed nothing much and the gyno I saw was unhappy with the quality of it and said I should have had an internal one anyway. I was very prepared for this second gyno app., with a written record of my period/symptom history, current symptoms, how it affected my daily life, and most importantly, the q's I wanted to ask. I don't know about you, but I tend to leave every Dr's app. feeling like I haven't got across everything I was meant to say or asked the q's that I wanted to ask. So I'd really recommend doing that, it's your app. so don't feel like you're wasting their time and make the most of it. The gyno I saw was pleased that I had written the info down for her and made sure we went through my q's. My main q was really "do you think I have endometriosis?" because before that no doctor had mentioned it and I had discovered myself that I had many of the symptoms. So I didn't actually ask many q's about endometriosis itself, but even if you don't have a diagnosis of endometriosis yet don't feel like you can't ask more about it (I still have q's that I wish I'd asked). Anyway, at that app. the gyno did an internal ultrasound, and confirmed that it did seem very likely that I had endometriosis. I also ended up gettig a coil fitted at this app. and came off the injection. It seems like you have plenty experience with heavy bleeding in front of medical professionals, but just know that you're not alone - I began to bleed heavily during the coil procedure and caused all sorts of difficulties for them that I will spare you the detail of haha, but they were lovely about it. That app. lasted hours and was really thorough, they never made me feel like I was taking up too much time - I hope yours is as nice as that I was booked in for a check up scan to see if the suspected endometriosis tissue had changed and to check the coil. I had that last week and it seems that since my last app. they looked at my scans and confirmed that it definitely is endo, likely on my ovaries and bowel, because that is what it said on the system (I saw a different gyno each time). I have now been discharged until further referral and am just to wait and see if the coil helps my symptoms after a year (although I will go back sooner if I'm having significant issues). I wish I had written down q's for that last app. because I left feeling like I didn't have any, and now I have q's I wish I'd asked. I would say don't be afraid to ask anything, no matter what it is. If it concerns you, it's important. And ask as many q's as you need to. I know how frustrating it is to have these type of problems for so many years without an answer, and it did help me to know that is was endometriosis, but don't lose heart if you don't get any answers. I didn't at first, just another change of contraception. Sorry for the ramble, I hope it helps you to read someone elses experience, and hopefully there is something helpful in it haha! I hope you manage through this period, sending hugs your way! Katie x

[hayleyworried in reply to KatieJBW]

Hey Katie, thank you so so much for taking the time to respond and telling me your story. Its awful to think so many people are going through this! Really hope the coil carry's on helping you lovely! My Drs refused me going on the injection or coil in the past as they thought the side effects would be worse then what i was already going through! Just cant wait to get my Gyno app through - iv printed off so many questions and a diary so I can go so so prepared. Even though its horrible hearing about other people in pain - reading other peoples stories have help reassure me that im not just making it all up in my head - feel like a right moaner to my friends and worry they dont understand properly. Hopefully once they confirm its Endo - or something else (god knows what after 7 years of hassle) i will feel relived finally to have an answer! xxx

[Flower58]

Hi Hayley,

I've had a lot of the issues you have had as well (just like many of the other girls with endo). Had my period at 11 and was very heavy and painful, went through multiple forms of birth control and still had no luck. I'm 16 now and was diagnosed with severe endo last Monday, through a laparoscopy. They inserted a mirena, so fingers crossed that this gets my periods regular, lighter and less painful.

Some questions that you should ask your gynaecologist if you suspect you have endometriosis/pelvic pain disease:

"Will this affect my fertility?"

"What can we do to try and prevent infertility issues?"

"What options are available for me, if I do end up having infertility issues?"

*Please note that you may not have infertility problems, many girls have had children with endo. It affects everyone differently. It is still good though to still ask questions about it, as endo and other gynaecology diseases can cause infertility. I was 15 when I first saw the gynaecologist, however I still asked these questions so that I knew what options were available for me if I were to have problems having children later on in life*

"What are some other ways to manage my pain?"

"What are the long term affects of X medication?"

"What are some of the risks of having a laparoscopy"

"What other specialists do you recommend I see to help manage my pain?"

"Is X disease heredity?"

"What are some medications I can take when I have a flare up?"

"Who do I see/contact when I have any concerns?" (example: worried about heavy bleeding, blood clots, pain etc)

I also suggest that you keep track of your pain and symptoms in a diary, so the gynaecologist can read through it and see just what exactly you're going through. They will also be able to identify any patterns, or changes.

Good luck to you, and feel free to inbox me if you have any questions or just need someone to talk to xx

[hayleyworried in reply to Flower58]

Hi

Thank you so so much for the questions - they will help so much!

Sorry to hear you are going through this especially as you are so young, I really hope the coil helps you!!!

Yep iv printed a diary and some forms to fill about my history so far so I can go to the app with as much info as possible as I ALWAYs forget to say everything I want!!

Thank you again for responding - its so reassuring to know there is people to talk to

Hayley xxx

[Lou7707]

Hi Hayley.

I’m sorry to hear this.

If you need someone to talk to, we have a network of support that available to women with endometriosis. Our free helpline 0808 808 2227 is run by volunteers who have experience of endometriosis. The helpline is open most days – the times it is open can be viewed here: endometriosis-uk.org/suppor...

Also, to assist you with getting a diagnosis, here is some helpful information. There is also a pain and symptoms diary to download and fill in, which may be useful to help you remember relevant information for when you see the gynaecologist.

endometriosis-uk.org/visiti...

Louise

Endometriosis

[hayleyworried]

Quick update - ended up in the bath with extreme pain at 4am not 2am which feels like a huge accomplishment, now dosed up on codeine, mefebanic acid (trying it for the first time) and buscopan (someone suggested it but don't know if it will help or not as I can't empty my bowels when I'm on my period anyway! Sorry if that's tmi)

My gyno app has come through for 13th march which is was sooner then I imagined so thankful for that!

Xx

[hayleyworried]

Update - I have a bicornate uterus and had my pre - opp yesterday to have a diagnostic laparoscopy however this could take up to 15 weeks I get married in 20 weeks and have 3 hen dos and 100 other things to do and worry about too i feel so overwhelmed! xxx