Advice on my Endo journey and symptoms

[selkie83]

Firstly, apologies if this has been asked, but i couldn’t find anything specific in the search options.

bit of a summary of my journey:

*have had period since 12 years old, always been very painful, very heavy, very long - was told at 15 years old by DR after collapsing at a friends house to 'learn to deal with it'

*from around 22 - 38 had random, maybe once a year severe pain directly before large bowel movements, which would again cause me to black out and end up defecating on bathroom floor

*have sought medical assistance re bowel issues but they never show any problems

*felt hard mass in pelvic area in 2022, didn't think it was sinister until i felt it again a few months later. first saw GP about it in 2023 and was referred for ultrasounds which confirmed a large fibroid and 2 cysts, one on each ovary. Was referred to Gyno specialist

*in July last year i collapsed while watching TV, was perfectly fine one second then in the most extreme pain id ever experienced, vomiting, sweating, unable to move - called ambulance but wasn't seen at A&E for 8hrs so pain had long gone

*Since July last year to date (July 2024) I have had 10 of these 'attacks' 3 as severe as the first. All causing me to collapse and stop me from doing my normal routine

*I saw specialist in Feb 24, who said i'd need surgery and to get blood test and have MRI. The blood test results came a month later and showed high serum levels (CA125 and CA19) which could be sinister or could just be the endo. MRI confirmed the cysts and fibroids, but they had gotten bigger.

* Saw specialist again in April 24 and he just wanted me to take medication to shrink fibroid, didn’t refer to cyst or blood tests until I asked about it. Told me the serum markers could be cancer or not, couldn’t tell me for sure and couldn’t tell me what kind of surgery I would need and he needed to get advice from colleagues.

*6 weeks later I hadn’t heard anything so I rang his secretary who apologised and said he had gotten the advice and should have arranged follow up. Couldn’t see him again until 8th July 24

*The meeting yesterday was similar to the last, he kept talking to me again shrinking the fibroid, having forgotten about the cysts and serum markers and indeed the reason I am seeking help is due to the attacks. I can’t drive, go far or go into office anymore through fear of collapsing. He stared at me blankly and asked me what I wanted. I am not medically trained so do not know all medical options available, It was basically hysterectomy or nothing (he did advise against Hysterectomy but couldn’t give me any other option besides just dealing with the pain and trying to shrink the fibroid)

I am basically asking if anyone else experiences the similar issues I do – I still have the bad periods but I can manage that as it is expected. These pains happen anytime a month, normally start off in one location, like a sharp poker has been rammed into me, then it feels like my internal organs have been flipped / wrung out like you would a wet cloth. Then the central focus of the pain feels like it is moving in a somewhat triangular motion.

Not once has any medical professional explained what is causing the pain, is this just normal endo? Is it even related to endo? Will removal of the cysts and fibroid stop the pain?

Thank you to anyone who can give me any advice and for taking the time to read my novella!

[Scoutybob]

So sorry for this. I've had a not entirely dissimilar situation.

I have stage 4 including bowel involvement, multiple adhesions, the one ovary has a peach sized endometrioma and the other ovary has multiple smaller ones and it's through the tubes as well as adenomyosis.

I've had a number of attacks very similar to what you describe, the worst being last September which prompted me to finally have this explored.

After an MRI confirmed everything, I was referred to a BGSE consultant and I found the appointment similar. I could do nothing, medical management (which I'd already been told by a normal gynae wouldn't work) or the conservative surgery. My letter that came afterwards said we discussed these options along with an option of full pelvic clearance. We didn't. There didn't seem to be any 'advice' as you have said. It was 'what do you want me to do'. I found this really disconcerting.

I'm pre surgery so I don't know what will help either you or I but I just wanted to say that I'm sorry you feel so lost, and the attacks are awful.

[selkie83 in reply to Scoutybob]

Thank you so much for replying and sharing your experience with me. I'm sorry you are having to go through this too. I have an appointment in August with a Private doctor to seek a second opinion. Not once has the specialist ever said what stage Endo I have, nor has he taken any interest in the cysts which he cannot discount could be cancerous, but said 'it's probably fine'. All he wants to do is prescribe medication to shrink the fibroids and have me on my way.

I am on the waitlist for the surgery, but hopefully will have spoken to the other consultant before then and will with any luck have some further clarity on my actual options.

Hope the surgery goes well for you and you don't have to deal with the attacks anymore

[Scoutybob in reply to selkie83]

Yes I am thinking the same regarding a second opinion. It was an exceptionally quick appointment and I felt cattle herded through. I was asked a couple of very basic symptom questions which he essentially wanted a ‘yes/no’ answer to when my symptoms are very varied and what he was asking wasn’t really relevant to many of my issues. It’s really frustrating.

[BloomingMarvellous]

They can’t tell from scans what stage endometriosis is beyond when it’s so clear to be beyond doubt. Even then the extent can be misleading without proper diagnosis via a laporoscopy. Given your symptoms I would be concerned that there is bowel involvement that may it be evident properly in the scans. You would require a bowel specialist at the same time as an endometriosis surgeon and this should be arranged through a specialist BSGE centre. Quite why you appear not to have been seen by and endo specialist but only gynaecology and other medics I don’t understand. You can have fibroids and endo but often women have fibroids and no real symptoms until much later so I would suspect the endo is likely more the driving issue here.

Try to find out if the specialist you are seeing can refer you into a BSGE clinic or is part of that set up. If not find one who can as it sounds as if any surgery you may need will likely be complex. Ca 125 raises with endo as well as cancer so you are right to query but it bloody well needs properly investigating. You may want to complain via PALS at the poor follow up you’re experiencing.

[selkie83 in reply to BloomingMarvellous]

thank you so much, this is really helpful. I'm going to see how I get on with the new specialist, the appointment is 1st Aug so not long given how long i've already been waiting. Hopefully he gives me more answers and if not I know what to ask about from your helpful reply.

[Stitchrunner1]

I am old now and completely out of touch with the new treatments or even the lack of them. All I know, is that prejudice is still around and attitudes of doctors are less than helpful. One thing I learned was to not to listen to all the pull yourself together non sense and it will get better after this or that life event, it doesn't it stays with you for life. I learned to wear my big knickers and duvet sanitary protection like armour. I learned too that there was a lot to be said for tortoise thick shell, to ward off all those catty women who didn't have the problem who bitched at me. And here is what I say to you, treat yourself well, if you need to rest, rest. If you need a hot bath, have one. Take pain killers. Don't over dose but don't skimp. Get a bottle of anti acid and a bottle of liquid constipation medication and use them. Frequently. Pain killers bung you up and rip your stomach lining. Get your self a good book and read it in the loo. Pooing can take for every once painkillers get involved. Do not be ashamed. It is not your fault how ever much everyone else wants it to be. And never, ever, wear white trouser.

And last but not least. You are not a womb with issues. You are woman with ill health and bad luck. The rest of you is still, lipstick. (don't lie, we all love lippy) high heels, (no we don't like those) and bad attitude (absolutely). And you are a member of the Sisters of Endo. And you are a warrior. 😀

[selkie83]

Thank you 💛