Newbe to Endo..

[GSUndiagnosed]

Hi All.. I've just found this forum through Endo-UK and it's been so helpful to read everyone's posts.. I'm a newbe to Endometriosis and have not been diagnosed, but my symptoms are pointing towards Endo as a possible cause..

For the last 6 months I've been trying to find a cause for abnormal bleeding (after sex to be frank) along with the following:

- Changes in bowel movements

- Pain during sex

- Pain whilst peeing (when on period)

- Increased pain during period (lower abdominal and lower back pain)

- Dark blood at start of period

- Severe pain whilst ovulating (Something I've never had before)

- Possible fertility issues

I've had a private smear test, STI checks, a vaginal ultrasound, thrust tests and multiple doctors appointments. In my last gynaecology appointment they mentioned 'Endo' but kind of shrugged it off and mentioned that it was common with no mention of follow ups or investigating further.. I felt so deflated that I haven't had a full diagnosis and she even said ''Honestly I don't know what's causing your symptoms''.. I'm a nervous person by nature and after ruling out the 'big C' through my cervical smear and ultrasound.. I'm now doing my own research into Endo and what it involves..

I think my symptoms match and my Gyno said it was a possibility (whilst shrugging her shoulders).. I've had days to think about it and I keep crying about not knowing.. But I don't think my symptoms are severe enough to get a Lapro to diagnose.. Fertility worries me the most.. I haven't been on any sort of contraception for 2 years now (I'm with a long term partner) and haven't ever got pregnant.. I'm scared that I will not be able to conceive when the time is right..

I feel like I can't talk to anyone about it and that I'm wasting doctors time.. I feel worried all the time so I thought coming on here to release my emotions and reading your stories would help. You are all very brave women! x

[luthien]

Aww

You could push for a lap to diagnose endo. It will help as they can have a look at everything in there, take biopsies of stuff they find. You can sign to have any endo / cysts / fibroids removed if they see any at the same time.

Symptoms vary from women to women, some will have lots of symptoms with little endo, some will have few symptoms with lots of endo. Some have endo and other things, so it's best to see what you have then you can plan your future.

I had slightly less symptoms than you, and my specialist was happy to do a lap as he suspected endo. They found endo all over my bladder, uterus and bowel, also they were all stuck to each other, including my urinary tubes. My specialist excisied my endo, unstuck everything, carried out a hysteroscopy (revealed a fibroid in my uterus)and took biopsies at the same time, internal examination of my vagina revealed a flat pubic bone (makes it tight and sometimes painful) all in one op which was amazing!

In terms of fertility I have signed up to Natural Cycles last year, as I've been off the pill for 5 years almost so I know the feeling. It measures your basal temp along with getting you to do LH (ovulation tests) and logging periods, it calculates your cycle and is specific to you (no general data for averages), explaining everything. It even works on irregular cycles as it calculates based on what you input where ovulation is; suddenly they are not so irregular, patterns appear. I didn't realise that LH tests just mean a peak in LH and ovulation may occur, an increase in basal temp after actually means it has occurred. That makes it so much easier to understand my cycles now and plan for when I want to plan lol!

[GSUndiagnosed in reply to luthien]

Thank you for replying I have Natural Cycles too. It's definitely a good app for logging periods. I log when I get pain as well so that I can keep a track of it throughout my cycle. I'm sorry to hear about your op and pain.. Glad to hear that you got a diagnosis though

I think I will research more about endo and track my pain.. If it gets worse I will look at the lap diagnosis route.. I just hope it doesn't affect my fertility in the future, fingers crossed!

[luthien in reply to GSUndiagnosed]

yay good to know someone that uses it too!

definitely track your pain, keep a diary like a month a page, record levels of pain (on your own 1 to 5 scale) along with any symptoms, include periods and ovulation. Then when you do want to look into a diagnosis and lap you have more evidence for problems and therefore a reason to find out what's going on and a lap is the best way to see stuff.

[Abi_97]

Theres no such thing as not severe enough to get a lap 😤 I feel like I dont get as much pain as some women do but turns out I have severe endo 😮 In the end we dont know whose in more pain because theres no way to tell or compare 😮I would keep pushing for a lap to diagnose it 😮 Your symptoms are exactly like mine once you get diagnosed you can try different hormonal treatment and like me at least hopefully you can get rid of pain peeing 😂 You are brave as well 😉 X

[GSUndiagnosed in reply to Abi_97]

Thank you for your reassurance Your definitely right about the levels of pain.. How can we compare? All period pain is bad! X