I think I have endometriosis

[PinkButterfly25]

Hi,I am a 25 year-old teacher and I think I may have endometriosis.

I thought I would post my story on here in the hope that somebody may have had something similar and maybe let me know how the rest of their journey to diagnosis went.

I started my periods at the age of 10, they were always heavy but thankfully never painful. I did however feel more tired on my period and knees did feel weak but nothing major.

When I was 18 years old I experienced my first ruptured ovarian cyst and since then experienced similar pains in that area now and then.

Again no issues with period pain and they were still regular. But during 2020 I noticed that my periods were becoming more frequent (my average cycle was 21 days!) and this left me incredibly lethargic, lightheaded and with a strange ache in my legs. I eventually when to my GP in May 2021 and got a blood test which was also sent to the endocrinologists which came through showing I had anaemia and cysts in my ovaries so to treat the anaemia Iwas prescribed Ferrous Fumerate (iron) and regarding the cysts I was referred for a scan at the hospital.

Coincidentally in June I experienced my second ovarian cyst which this time I felt prior to it rupturing and because of this I couldn't walk or go to the toilet without pain and because of this cyst my cycle lasted 35 days and I also had to take time off from work.

I had two ultrasound scans, the first showing another large cysts after the aforementioned and the second scan showing nothing even though I was still experiencing so much pain (sort of left me feeling deflated and like I was making things up)

It's weird because since the day I had the above cysts I have had chronic pelvic pain and lower back pain and my periods have become painful and tiresome. Hot water bottles have become my best friend! Further I can't do physical work without experiencing pain straight after.

To the point where in Decemeber 2021 I ended up resigning from a new teaching job because I just couldn't cope! In Feb 2022 I was prescribed tranexamic acid pills to reduce the heaviness of my periods but my body felt so weird when taking these so I stopped.

This summer I experienced my worst combination of symptoms: lower back pain, pelvic pain, abdominal pain, bloating nausea, period pain and lethargy. I have been wearing knickers which are are 4 sizes bigger than my actual just to provide more abdominal comfort and I still can't wear tight clothes on legs/any weight on my pelvic area.

So this September I visited the GP again and said that I am ready to take any measures necessary I had even previously offered the combined pill but was reluctant however this time I said that my daily life with periods is just becoming unmanageable. So currently I have been prescribed Ferrous Fumerate again as my Iron count has depleted again, furthermore I have been taking the combined pill for 9 weeks.

Anyways my GP did mention that from what I have described I may have Endo but that she doesn't want to jump to that straight away.

So would love to hear from anyone who has had anything similar!!!

[Jodee25]

Sounds like you may have it from the last details u described.. lower back pain, pelvic pain, abdominal pain, bloating nausea, period pain and lethargy. Also do you have painful bowel movements? If I was u I'd push to be referred to gynecologist now as like myself they fobbed me off since the age of 14. I'm now 31 and have just been diagnosed. Had diagnostic laproscopy 12 weeks ago now been referred to a speashilaist in endometriosis as it was near my rectum and in my pouch of douglas as well as both uterosacral ligaments. Not to mention 3 nodules 1 of which had to be sent for a biopsy. Thankfully not cancerous. Good to know I'm not nuts and all the pain I've suffered all them years also becoming infertile. I also was given trac acid and then offered the pill. This just delays them to send you to the gyno... next ul be offered about 5 scans before they even bother, maybe even an mri. You need to push them. Without seeing gynecologist you won't get the ball rolling trust me. Good luck xx

[PinkButterfly25 in reply to Jodee25]

Hi,

Thank you so much for taking the time to read my long post and replying!

I think that is some sound advice and I can't believe you only recently had a diagnostic laparoscopy I'm so sorry you had to wait that long. Thank goodness the nodules were not cancerous !

So at the moment I am using the pill for a trial period of 18 weeks and then I will get into contact with my GP (who so far has been amazing) and like you said push for a referral.

Good luck with life post diagnosis!

[Jodee25 in reply to PinkButterfly25]

No problem. Yes I would get refered ASAP. Its not nice having to be in pain and then even be told its normal. It's not normal to feel like your in labour every month. I have a 11 year old and havnt been about to get pregnant for over 7 years. Wish u all the best xx

[PinkButterfly25 in reply to Jodee25]

I really wish you all the best regarding pregnancy and fertility but your 11 year old is lucky to have a strong mother like yourself!!!

[Kieraface]

like jodee I would recommend asking for a gyny appt asap. It does sound very endo/adeno based. I have always had bad periods, and long ones. My doctor blamed contraception and kept changing what I was on. Nothing helped. I spent 18 years trying to get to the bottom of it and had to go private to get a diagnosis. I’d strongly recommend getting seen by a gyny sooner rather than later. Better to have treatment then let it spread everywhere and cause more issues. Endo can be very aggressive and the last thing you want is for it to spread to your bowel etc xx

[Jodee25 in reply to Kieraface]

I have my appointment the 8th of January to see the speashialist. After my diagnosis laproscopy I am exactly the same, like I said they removed what they could but as she was only a gynecologist I needed to see the speashialist as I may have to have more than one specialist as some is already near my rectum. I feel as if I have deep inf endo to. X

[Kieraface in reply to Jodee25]

I hope the specialist is able to help you and relieve the pain. Sadly I am still in unmanageable pain so have to have further testing and possible further treatment too. I hope your appt goes well in January x

[Jodee25 in reply to Kieraface]

I hope u find some relief to and answers. Its horrible what us woman have to go through. Xx

[PinkButterfly25]

Thank you so much for taking the time to reply to my message!!I am so sorry to hear that you went through pain for 18 years.

I would like to see a gyny and although I did have a meeting with one he just asked me a few questions about my periods and then like my GP recommended either going on the pill or tranexamic acid for my heavy periods.

So although I will be definitely taking on yours and Jodee's advice there is a part of me which feels like I might come away feeling deflated and back at square 1.

Do you indeed if I ask what happened at your gyny appointment?

Have a lovely evening

[Kieraface in reply to PinkButterfly25]

So at mine they did an ultrasound and an internal examination (which was very uncomfortable) - he could see a bulky uterus and cysts so he then sent me for an MRI scan which confirmed deep infiltrating endo (DIE) and adenomyosis. I then had excision surgery 2 months after this diagnosis. This was all done privately as I was always dismissed by the NHS as just having bad periods.

Tranexemic acid works for some - didn’t work for me, they gave me norithestrone which seemed to work initially but now I’m constantly bleeding. Currently on day 60 of this bleeding cycle.

I hope you get answers. I would try push for a gyny apt or at least for an ultrasound/MRI with someone trained in gyny issues x

[Jodee25 in reply to Kieraface]

I had numerous scans before referral over the years then finally got a break through 2020 when a scan showed PCOS. But I didn't feel as if that was all I had. All my symptoms were pointing to endometriosis. Even after being diagnosed with pcos I mentioned how does that effect my bowels every time im due my period I had direah before. But apparently by talking through a phone as it was lockdown I was then diagnosed with IBS.. honestly it's been rough. I now randomly get direah and nausea about 4/5 times through out my cycle. Due to all the being fobbed off by the docter. Anyway I finally got to see gynecologist September 2022 had an internal with her fingers up me and she pressed on my tummy at the same time. Was abit uncomfortable but bearable. After that she said you can have a laproscopy if you want but I'm 100 percent certain they won't be anything found. Ohhh really OK... yh a year later and 3 days had it done September 8th 2023. Who was there to tell me what was found. Yes my gynecologist that was certain nothing would be found. Result finally thinking yes I'm gonna be pain free and maybe be able to get pregnant to be told it couldn't all be removed and I need a speashilaist. So here I am. Still going through it lol x

[PinkButterfly25 in reply to Kieraface]

Thank you so much for explaining what happened it is so helpful to hear other people's processes and journeys.

I cannot believe you've been bleeding for that long, but if you are feeling tired because of the amount of blood loss I would definitely recommend taking Vitamin D( Nutravita Vitamin D 4000 IU - 500 Micro Tablets) my GP recommended it because as well as having low iron levels my vit D level was significantly low.

[Kieraface in reply to PinkButterfly25]

I’ve been on vit D since I was 21, I also have a neurological issue (presents like MS but hasn’t been diagnosed) so treatment for that is high doses of vit D xx

[BloomingMarvellous]

Ask to be referred to a Endo specialist- check out those in your area. The wait will be a long one so worth it’s cost to find someone who works both privately and NHS and have an initial assessment done privately . Your GP saying don’t want to jump in straight away - pardon me but you’ve had to surrender working it needs attention! Try Nancys Nook o FB or Lindle on here has her own advice and reference for services.

Self care is essential part of the endo kit. Try looking at @corerecoverypt and @healendo. The latter has a book of the same title Heal Endo by Katie Edmonds.

[PinkButterfly25 in reply to BloomingMarvellous]

Thank you so much for your helpful response especially the resources you linked!

I know this sounds silly but do I just ask my GP to be referred to an Endo specialist and will it be likely that I will be referred seeing as it is not 100% certain whether I have it or not.

[BloomingMarvellous]

Your GP may not know the difference ( I know !) or know the best. It’s worth going onto those links- Both are good resources. Try checking with Endometriosis UK if they have a local support group where you can ask for your local setup. Asking your GP then for a specific referral ought to then be much more straightforward. You do have the right to request a specific referral 💕 Endo UK also have a symptoms check list to download which is useful to get together both for your GP and the specialist . Sitting down and tracking the history and how it’s increasing is useful both in terms of the number of symptoms and their severity. Think long term rather than just last few months . Writing it down and leaving them a record means you’ve got more time for questions etc rather than spending huge chunk of any appt listing the growing number . Never ever underestimate or minimise its severity - they find it hard enough to hear it’s a problem anyway and if you “trim” it just to be amenable you won’t be heard.

As an aside it’s really worth digging around in your family history and discussing the issue. I found it was a massive issue for a lot of the women in our family spread across the world and none of us knew. Some had diagnosed endo, many not but all the indications and had had no help. It pushed my surgeon into looking even though I am older as it upped my odds .

[PinkButterfly25]

Thank you so much for your advice; you're literally like an older sister or aunt who has the advice I need. I'm definitely going to take on your advice about checking with Endometriosis UK if they have a local support group like you said; that should hopefully make referral easier!

I actually completed the consultation questionnaire and kept a symptom diary they have, in which you have to record your symptoms. But didn't feel confident enough to suggest this to my GP during our last consultation. But will definitely give this to her when I make our next appointment.

Thanks agaon