Feeling helpless

[clarafar]

My first post on here but feeling sooo lost and confused at the moment.

I have suffered with awful period pains since I was 15, I am nearly 27 now and pain is only getting worse. I also suffer with IBS symptoms, pain during sex, lower back pain and hip pain. It has really started to effect my mental health and my social life - when the pains are bad I can't get out of bed and am often sick/ faint with the pain.

I have been back and forth from doctors about this since 2012 and finally in May last year got a referral via NHS for Endometriosis specialist (BSGE accredited). I haven't heard anything from NHS since confirmation of my referral and have been told I could be waiting for over 18 months. I have had an ultrasound and they couldn't find anything.

I joined Benenden Health while I was waiting and through their health care plan had an appointment with a gynecologist at their hospital. I was hoping for some answers but I have come out of the appointment feeling a bit emotional. The consultant wasn't an endo specialist but said he would do a diagnostic laparoscopy and if he found endo then he could remove up to stage 1 - 2. If he found stage 3 - 4 I would have to be referred back to NHS and have them operate. He also told me that 70% of his patients who have the laparoscopy do not end up having endo - do those statistics sound right to people?

He also said he would use ablation rather than excision and that this is normal for stage 1 - 2 endo, is this right as I thought excision was the gold standard from what I have researched.

I asked if my pains could be anything but endo and was told that it is either endo or just how my body is.

Does anyone have any advice? I am feeling rather lost and conflicted about what to do . On one hand I want some answers but also don't want to go through surgery for no reason or to be given the wrong diagnosis.

[Iamyumyum]

I'm sorry you are going through this. Unfortunately alot of us have had similar issues. I would personally ask for a second opinion from a Gynecologists who has experience in Endometriosis. Also you can contact Endometriosis UK they are very good they really helped me last year. I was told I was having a hysterectomy which i refused stated it was a lanscopracy to confirm and remove lesions not body parts.. i basically got dropped. I spoke to a advisor at endo uk who made me feel alot better about my rights and a better understanding of what my choices were.

Now I'm far from treatment however feel I made the right decision. I have watched a Dr on YouTube answering questions from Endo uk on the thorax which he specialises in but hes very informative on endo as a rule. I believe it was their own channel.

[Luc81]

I'm so sorry you feel like this, I've been there, hopeless, in pain, and nobody understands. If I can give advice I wouldn't do laporoscopy with just some surgeon, ablation is not the right procedure for endo and from your symptoms you have 90% endo, I'm not expert but I have endo. I had ablation first time and made it worse . 70% women feel better after sound like BS, women have up to 6-8 operation because they not done properly. You need endo especialist. Dont let them tell you otherwise. There is a list of surgeons in icarebetter site. And also Nancy's nook Facebook page with the best surgeons for endo. I had 3 operation, the 3rd one was private with Czech doctor but he completely change my life. After 10 years I have no period pain, please do your research, there are few doctors who genuinely want to help but not many unfortunately.

Also there few lifestyle changes needed. Endo is awful complicated disease. Wish you luck hun, we don't deserve this suffering. Doctors need to care more.

[IB15]

I'm so sorry to hear you are going through this, it can take years to get to that answer and you are often left alone not knowing who to turn to or what to do in between disappointing appointments.

My best advice to you would be to ring the NHS BGSE centre, and ask where you are on the waiting list. You can also ask to speak to the endo nurse for some advice on how to manage your symptoms whilst waiting for the Op.

I was offered a lap with general gynae but asked to b refered to a BSGE centre, there was a big wait but I honestly would say it was worth it. I took the Progesterone only pill while I waiting which helped enormously.

I was like you vomiting and fainting with the pain, didn't know what to do - the pill has helped me massively while I wait for my next surgery to get rid of the larger endo.

I was so convinced by doctors for years that I didn't have endo, (all of my scans and blood tests came back super normal.) The weeks before my diagnostic laparoscopy I was utterly CONVINCED that I was going to wake up feeling a fool with them saying there was nothing there. I took comfort in thinking if I don't have it - that is a good thing and I can keep searching for answers. Please don't be put off having the lap, it's not that bad and it's so worth it to give you peace of mind. I also think it is worth having it at the BSGE centre, even if there is a wait because they will know where to look for you and be able to get you the right help. Don't put yourself through it twice.

It may also be worth asking for an MRI scan to see if that can pick up anything.

The endo uk helpline is incredible for those days where you feel on your own - they are so lovely.

Hope you get answers soon - happy to chat! x

[Misswah]

I've been in a similar position where I had an appointment with a general gynae who told me she would do a laparoscopy to rule out endo (told me she thought I had IBS) but that a lot of women end up having "clear" laparoscopies but I was convinced she would find something. I had the lap and she didn't find anything but my symptoms continued to worsen so I went private and had another lap with an endo specialist who then found stage 4 endometriosis. The reason the percentage of clear or negative laparoscopies is so high for general gynae on the NHS is probably because they don't know what they're looking for and can't recognise all presentations of endometriosis lesions. I understand how awful it is to wait and wait while you're suffering with horrible symptoms but if you wait to see an endo specialist you will have a much better experience and outcome than having ablation surgery with a general gynae (who may not even find anything!). It's worth calling them to confirm you are on their waiting list and maybe speak to your GP about how to cope with your symptoms in the meantime, they might be able to offer you something to help you get through the waiting period.