Advise please ...🥺

[Sarah-Louise-ward]

Hi guys ,

Just a bit of advise from anyone at all. I was diagnosed with endometriosis 3years ago I have had a lap, a 5hr operation and countless amounts of pain management treatment. I currently taking 8 tablets a day and spending £30 a month on prescriptions.

Im literally at the end of my tether. My mind is going crazy with what to do next and I'm at the point of asking if I can have a hysterectomy or my ovaries out as I have server pain when ovulating and when on my period.

I'm 26 (27) in couple weeks I have no children my boyfriend doesn't want to try just yet due to being in the process of saving/applying for a mortgage and I just don't know what to do.

Help advise is needed please 🥺🥺🥺

[JJS09]

Hey, I’m yet to be diagnosed my op is in three weeks but I’ve heard from other women that a hysterectomy doesn’t stop endo so I don’t think that would help your pain, in terms of your Perscription’s you can get a yearly certificate for around £100 I buy these as my monthly is so expensive I know it’s still expensive but it makes things slightly cheaper.

I hope you can get something to help you with your pain soon xx

[Sarah-Louise-ward in reply to JJS09]

Yeah your right in saying it doesn't stop endo .. but it's more when I'm ovulating that i can't move so if my ovaries arnt there I can't ovulate ... And surely if I get a hysterectomy because I'm not going to have periods endo won't return I had a op 18months ago and had a scan about 3 months ago they said nothing is back regarding endo bit they are keeping close eye on my ovaries as they are worried about my cysts ... I have another scan on the 19th September.

Thank you for your reply I hope your operation goes well. Xx

[JJS09 in reply to Sarah-Louise-ward]

I’m not really sure about endo not returning without periods as I’ve been told it can still return and women get pain after a hysterectomy, I would ask your GP to send you to a specialist as there might be something else they can give you until you and your boyfriend are ready for children. My consultants also told me that they wouldn’t give me a hysterectomy because of the effect it can have on other things such as bones and whatever other medical jargon she said, I would discuss this with your doctor to get more information.

I completely understand how your feeling as I too have said that I would rather just have a hysterectomy so I don’t need to deal with this and I’ll find another way of having children it’s just so hard to decide when your young and still have other things to consider xx

[Sarah-Louise-ward in reply to JJS09]

Yeah you have a point ... But I'm just so fed up I just want it all out 🥺

Literally watching my career and relationship falling apparent because of this condition that can't be treated effectively.

[JJS09 in reply to Sarah-Louise-ward]

I couldn’t relate to that more I’m a dancer and I’ve had to stop dancing for the now until I can hopefully get some sort of treatment but I’m just hoping that eventually things have to get better and that it will all turn out alright in the end, if I don’t think this I’ll literally go insane 😂

[_EndoWarrior_ in reply to Sarah-Louise-ward]

Unfortunately, Endometriosis produces its own oestrogen so a hysterectomy will not stop it. I have recently had a hysterectomy August 12th as I suffered from Stage 4 ...Deep Infiltrating Endometriosis, Adenomyosis, massive fibroid etc.

I also had painful ovulation. Hysterectomy was carried out due to my Adenomyosis, fibroma abs Endometriomas. I too had endometriomas on both my ovaries.

My operation was successful and all Endometriosis was removed by excision and slight signs of Endo shaved off my bowel and bladder.

Even though I’ve had all this done I will still have to be vigilant as Endometriosis can be silent also, without symptoms. I am hoping I will feel a lot better for undergoing such major surgery. You do what you have to do if you want a better quality of life.

May I ask if you previous surgeries were carried out by experienced BSGE Endo Specialists or Endo Specialist Nook Dr?

Did they use ablation or excision during your laparoscopy?

[stephkp]

Hi. I would go back to the doctor and push to be seen by a bsge consultant to discuss your options, and ask to be referred to pain management whilst your waiting. If you are spending that much on prescriptions you could apply for an nhs prepayment card and it will save you quite a lot of money. I think it’s about £29 for 3 months or £104 for 12 months and that’s all you pay no matter how many prescriptions you get x

[Sarah-Louise-ward in reply to stephkp]

I'm going through pain management atm have been since my operation 18months ago ! Never heard of a bsge consultants.

I've been back the doctors and they just keep telling my to take tablets and send me for scans and blood tests. And then tell me at the end I needs to seriously start thinking about kids ASAP if I want them.

Thanks for your reply xx

[stephkp in reply to Sarah-Louise-ward]

It’s a consultant that has gone through extra training in endo and various gyne issues that work hospitals that have been accredited by the BSGE. Unfortunately not all gyne surgeons are of the same skill level and if they haven’t gone through the extra training they don’t do a very good job at removing the endo or even locating it sometimes. May be worth asking if they can send you for an MRI. It’s more likely to see something than an ultrasound x

[Sarah-Louise-ward in reply to stephkp]

I'm going to do this first thing ! Book an appointment and ask .

Thank you so much !

[stephkp in reply to Sarah-Louise-ward]

If you go on BSGE.org.uk you can search for accredited hospitals in your area, so at least you have a bit more info when you speak to your GP, as they can also sometimes be a bit clueless. I would also say if they try to fob you off, stand your ground and say they have to refer you as per the NICE guidelines, and as you already have a diagnosis of endo it should automatically be a BSGE centre, but again the gp may be clueless on this x

[_EndoWarrior_ in reply to stephkp]

Yes, stand your ground and be persistent. You have the ‘Right to Choose’ through the NHS.

I did! Good luck!

[SweetpeaDonna]

From what I hear 3 years is a long time to go between operations. Every woman is different but I think by the sounds of it you may need another lovely. X

[Sarah-Louise-ward in reply to SweetpeaDonna]

Hey thanks for replying .... I was convinced 6months after my operation that it was back ... I've been for two ultrasound scans in external one internal and both came back clear of endo but I have cysts. But theres not much I can do but believe them. I can't go privet because they won't touch on going cases. Just feel stuck in a hole 🥺

[SweetpeaDonna in reply to Sarah-Louise-ward]

Go back and ask for an MRI Hun.

I’m due to see the Endo Nurse next week and the Specialist at the end of the month and I’m going to demand an MRI. The level of pain and my way of life is no different than before the operation except I’m working now. Before my operation they signed me off work for 7 months because I needed the “rest” but I’m not getting that now. To feel the level of pain your in isn’t right. They can’t detect Deep Endo on an ultrasound hun. X

[_EndoWarrior_ in reply to SweetpeaDonna]

I insisted on a pelvic MRI and got it. On the whole they do pick up signs of Endometriosis etc but also the radiographer must also be experienced in recognising the signs of Endo. Not all are which is why my consultant had a specific radiologist he used only.

[8001]

I’ve been living with this condition for nearly 30 years and have had operations , chemically induced menopause when I was your age.

Pregnancy and menopause ( temporary) are the two main things that help control your condition and dry it all up.

I was told at 26 after an operation to clear me up and put things back where they should be, that I was completely infertile as inside I was a total mess .....4 children later lol.

Each child and chemically induced menopause not only helped stop the pain and the condition but also slowed it down.

I think you should talk to your partner and either try and start a family as soon as OR go for the chemical menopause for a couple of years. At least it will stop the progression of the ending until you are ready to start a family.

I feel pregnant with my daughter about a year or so after I came off the medication.

If left untreated you may get scarring and falling pregnant may become a problem later.

Hope this is helpful. ( you can never really be financially prepared for a baby any way and they are always welcome so I really wish you luck xx)

[PS1978]

Firstly you need to be seen in BSGE accredited endometriosis centre. MRI can still be normal in pelvic endometriosis and don’t let them fob you off. I had to fight and see specialist centre who then confirmed a did had active endo despite normal MRI. Also you could consider zoladex which temporarily put you into menopause which has worked for me. Mirena is another choice. Discuss all options with a specialist team at Endometriosis centre. Also a prepay prescription will help to reduce cost.good luck.

[EndoJaz]

I had a hysterectomy and am still in pain awaiting another lap so it’s not the answer for everyone. Def get the pre pay certificate online. Good luck