Looking for guidance

[CherryBlossom5]

Hi everyone,

Sorry if this is a super long post.

To give some back ground, I started having very painful periods in 2015 when I came off the contraceptive pill at 20 years old. I came off because I have a breast cancer risk on both sides of my family and I felt that taking the pill was unnecessarily adding to the risk, at the time my GPs agreed with me that this is the best thing to do. I had been taking the pill since age and before that I had mild pain during my periods but nothing that really stopped me from going to school or anything.

I'm now 27 and since 20 I've been having really painful periods. This consists of very heavy bleeding and intense pain during period, mild, sporadic pain in the week before my period, mild pain in the week after.

The pain feels like I'm being shaved from the inside along my pelvis but then I also have very intense shooting pains up my ?rectum? (Not sure if I have labelled the right body part there) and I find it very difficult to go to the toilet as everything feels quite tight and swollen so it's like I'm trying to force through very small spaces. I also get a strange feeling in both my legs as if they aren't mine/they feel too light and I need to sleep with my knees bent up so they're grounded from my feet if that makes sense. When I am not on my period, I am able to go to the bathroom as normal.

I've been to visit the GP a couple of times and it was acknowledged that I likely have endometriosis and advised that the only treatment is the contraceptive pill which I have refused for the above reasons. They have said it's not possible to know if have it unless I have a laparoscopy but that would be a drastic measure. Just before the pandemic in 2019 I was referred to a gynaecologist who again said it's likely Endo but surgery is the only diagnostic tool and its not consistently actually helpful because it can sometimes leave behind scar tissue that causes the same problems. She advised I come back when I have thought more about whether the surgery is right for me.

I have been managing the pain using ibuprofen by tracking my cycle and taking it as soon as I get a first twinge of pain, this usually works well to reducing it to a liveable pain in the background and for this reason I have only needed to miss work once for period pain.

In the last couple of months, I have been experiencing bleeding during the ovulation part of my cycle and this prompted me to return to my GP who has referred me back to the gynaecologist, this time at a different hospital. The initial appointment waiting time is 24 weeks and the average waiting time for treatment in the service is 30 weeks. I don't know whether that means I will be seen at 24 weeks wait and then I can expect some sort of treatment 6 weeks after or if it's 24 weeks + another 30 week wait for treatment.

I have read about people passing out from the pain and having to miss their daily activities due to endo and I feel like an imposter who is wasting NHS time, I can't decide if I really have endo or if I just have a very low pain threshold and I'm making a mountain out of a molehill.

I'm looking for guidance from the community:

- do you think I could have it?

- should I ask for a laparoscopy

- if you have had the laparoscopy has it been worthwhile to you? I'm worried about potential impact on my quality of life

Thank you everyone, sorry again for the very long post, I appreciate any replies.

[puzzleprincess]

Hey, I had a pretty similar experience to you. So I was on different types of birth control since I was 15 for about 7 years. I started BC pretty much within a couple of years of getting my period because of pain, large clots and a really sporadic cycle. Came off when I was about 22 to see what my body would do naturally. My periods were really painful (which I thought was normal) and only got worse over the next 4 years.

I had my lap 3 weeks ago now where I was diagnosed with deep infiltrating endo. Now I decided to go through with the lap (even though it was just diagnostic) because of how much it was affecting my quality of life. I have extreme pain, and would regularly miss days of work/events and pretty much be bed bound. I also decided to have the lap because to get formalised support from your workplace, you will need an official diagnosis unfortunately.

What you need to decide is how much this is affecting your quality of life. It’s great your able to manage your pain with ibuprofen and can get along with your life, but it does sound like your in chronic pain through your cycle. I get some of the same pain in my rectum (some people call it lightning butt! Which I think sums it up nicely haha) and I get pain in my legs through the run up to my period starting. No one on here will be able to tell you whether you have endo or not, or even if you should get the laparoscopy. That is a big decision you need to make on your own, but maybe it would help to make a list of pros and cons? It really does depend on how much this is affecting your life. For a lot of us too, we have been in and out of doctors for years being gaslit into thinking our pain ‘isn’t that bad’ and it unfortunately gets to a point (like myself) where you aren’t functioning properly. So even just being able to have the lap to get that diagnosis can be a really validating experience. I cried when my gynaecologist gave me my results because I felt so vindicated!

I am back on the mini pill to hopefully stop my periods and stop the pain. Although this might not be a option for you - maybe you could ask the doctors about a coil? They have a lot less hormones in them than the pills and are recommended for people with endo, but of course some people don’t get along with them. If you do the diagnostic lap, just make sure you go with someone who has a ‘special interest’ in endo and they may be able to do some ablation while they are in there if your endo is superficial. Although (like myself) if it is deep infiltrating or you have more severe endo then they will close you back up, and you can then be referred to have another surgery at an endometriosis specialist clinic if you choose to, where they will cut the lesions out properly.

That was a very long reply but I just wanted to give you all the info I had! Wish you all the best x

[CherryBlossom5 in reply to puzzleprincess]

Hi Puzzleprincess, thank you so much for your detailed reply and so sorry for my late one! I only got an email notification for the most recent reply this week! Thank you for sharing the info about your journey, reading the similarities between us is really helpful to sort out how I feel about it all in my head.

Weighing it up, I think the not knowing is hanging over my head too much to not go for the lap, I think I will be pushing for it when I get my gynaecology appointment (although the waiting time has gone up by another 10 weeks). Hope you're doing okay after yours and the mini pill is working for your pain relief.

Thanks again for your reply and support!

[BloomingMarvellous]

Sounds pretty indicative of probable endo, but pain like this irrespective of the cause ought not to be dismissed or “regarded “ as making a mountain out of a molehill. In general women dismiss their own pain and expect themselves to manage. Listen to your gut feeling that not all is quite well. Get it checked out. The worst that can happen is that they may find a reason for your pain and be able to help. I also get not wanting it to be an issue as then we have to cope and deal with the consequences lark. Am ripe for that one and hoping that it will disappear over the horizon. Nope it didn’t and caused a lifetime of woe. So hug up 🤗 and trust your body it’s trying to let you know it could do with the TLC x

[CherryBlossom5 in reply to BloomingMarvellous]

Hi BloomingMarvellous,Thank you so much for taking the time to reply, sorry for the late acknowledgement for some reason I didn't find out about the replies until recently!

You're right, I've been trying to bury my head under the sand for too long; things have worsened in the last 3 months and reading the replies today has strengthened my resolve that i really just need to know either way now and deal with it whatever happens.

Thanks again for the reply, hope you're doing well yourself

[BloomingMarvellous in reply to CherryBlossom5]

Have DM’d you ( see chat button if you’re still figuring this place out )

[Moonlightmoon]

hello, I’ve had the same I was on contraception since I was 15 due to period pains, they wasn’t awful I could still go to school but as I got older they got much worse I finally came off contraception due to breast cancer in my family and also it made all my symptoms worse :/ but my periods and the week up to my Period and the week after I’d be so sick, I wouldn’t be able to walk, feel my legs, it felt like someone was stabbing me conastantly and spinning the knife around! I went to my doctors and they ignored me for years however I Jusy lost it and eventually got the opportunity to have the surgery and for me I Jusy wanted a diagnosis so I knew what I was dealing with! Instead of worrying what it could possibly be, my periods stopped me from doing my every day stuff, and to this day it still does even after my surgery :/ I can’t go on contraception again as breast cancer and they just make me worse, I tried the coil but that caused me even more pain it was like my body rejected it :/ I see this post was a while ago but I hope you get things sorted, it’s awful living life in pain I hope you get sorted or have got sorted ❤️

[CherryBlossom5 in reply to Moonlightmoon]

Hi Moonlightmoon,Thanks so much for your reply, it does sound like our symptoms are very similar - I'm really sorry to hear that the surgery hasn't helped with the pain management and that there aren't alternative options for you as well. It really is miserable with no pain relief.

It's good for me to hear from others that the surgery doesn't necessarily mean that everything is fixed and there is no more pain. I don't know anyone else to talk to about it face to face so I feel like from looking at the replies here I'm going into it with more of the type of info I need.

It seems like everyone has agreed that the lap is a good step forward just for knowing what you're dealing with so I'm going to go for that. My husband has insisted that I write down my symptoms daily and it's been quite eye opening the amount of time I do spend in pain. I still don't have an appointment with the gynaecology team but I'm going to bring the symptoms diary to show them and hopefully it will support my argument that I need the lap.

Thanks so much for sharing your story and the support, I hope things can get better for you.