I've lost all hope.

[Missy100]

I am so fed up and at the end of my rope.

I have been trying to get treatment for over five years now. There have been several GPs (due to the first one leaving the practice and Covid necessitating using who you are given). There have been several gynaecologists and scans. I get told one thing and then they do something else. If they even bother to note my file 9/10 it is never what we discussed.

My mother and her sister both were diagnosed with endometriosis and have had surgeries.to treat it. And from the very beginning of me saying I am having this extra pain during PMS that has become unbearable (to it becoming more often than not a while ago) I have had professionals saying it sounds like you have endometriosis. This is what we will do. But none of it ever happens.

I was sent for scans and x-rays and a physiotherapist in the beginning to make sure it was nothing else. The physiotherapist said it sounds like you have endo and nothing I can do is helping. You can come back if you want but I think you need to be following the path of getting a proper diagnosis and treatment.

I was involved in a weight loss program and the hormone specialist said....you have endometriosis. Until you have it properly diagnosed and a treatment plan I can't put you forth for any form of exercise. It shouldn't take long though as it is quite obvious that is what is wrong. That was in 2017.

I was referred to a local gynaecology team who decided my weight was the reason I was in pain and I should go to a 'boney' doctor (their words) and refused to discuss my pain at all. He resent me for PCOS testing although I told him I'd already been formally diagnosed about ten years prior to that. He forced me through a pap smear that left me almost unable to walk and in bed for days due to pain.

When I went back I saw another consultant who refused to discuss endometriosis and condisendingly explained I would always have PCOS and didn't have to keep asking to be retested.

The third time I went back I saw a third consultant who told me speaking about endo was a waste of our time and tried to discharge me as sorted. When I said I wasn't at all sorted he said I can give you some pills you might be a bit tired or warm sometimes but if you have endo that will be it your symptoms will all be gone in days 💯. He refused to discuss more and said take it or leave it. I went away to think about it. I'm glad I did. The pills came with all kinds of side effects and no firm or consistent proof of working more than not - just sometimes some patients found they helped some.

I asked for a second opinion referral to a BGSE center which my GP put through. She was convinced I have endo. Meanwhile, by this point I was already on mefenamic acid, tranexamic acid and tramadol to get through most days without completely losing it, on top of medication for depression and anxiety.

When the appt came through it was for the day before our wedding, taking place in a different country, so I asked to reschedule. I was told I had to cancel first and then could request a new appointment. The new appointment was at a different hospital. They refused me one at the BGSE center because they were no longer accepting new patients and as I had not attended atleast one appointment i still was considered a new patient. I was assured it was the exact same staff at both locations and it would not impact who saw me.

I went to the appointment in July 2018. Yep you have endo. She couldn't complete an exam due to pain. She said I needed a hysteroscopy to make sure nothing more serious was an issue first and then I would be booked for a lap. She insisted I had to try the hysteroscopy without being put to sleep.

I went to the hysteroscopy October 2018 It was awful. He didn't stop despite me and the student nurse telling him to several times. He first ignored us and then said oh, ok, just hold on I'm almost done. In recovery they didn't tell me anything except that when I started to fall over, when I tried to leave, it had nothing to do with the procedure (which was incorrect - it can occur to some people from your legs being in the air).

I went home and chased results. Again. And again. And again.

May 2019 (SEVEN months later) I was offered an appt to discuss results. I was seen by a student who refused the results and said they were no longer valid because it had been so long and I'd have to have another. I insisted only under sedation and she refused and told me to go to my GP for a depo provera needle and come back in six months (I think it was 6 months, it's been a while now).

I booked my GP appt but before it even arrived I received a letter in the mail for a presurgery appt. It turns out I was put forward for a sedated Hysteroscopy.

Three appts later, of which I turned up to each, I finally had the surgery. The first one was cancelled and I was sent home with a prescription for progesterone. They wouldn't let me actually see my consultant, instead having a student running between us with my concern that it says not to take if strokes run in your family history (they do, with my mother). In the end I was told not to worry and go take it. I had a GP appointment and raised with my GP and she sent me for tests, unhappy it had not been addressed appropriately. In the end I was given the go ahead.

I really struggled. I was sick constantly and my mood swings were all over minute to minute and wildly different from one another. My pain didn't get any better. My poor husband suffered the brunt of my chaotic mood swings.

I went in for the rebooked hysteroscopy and was told I was being ridiculous I certainly didn't have endo I had endometrial hyperplasia and they were just checking it was better. It was a consultant if never spoke to before in my life. She also sneered and said it wasn't like I qualified for a lap anyways as they don't give them to overweight people. When I burst out crying she said she'd make sure I had a follow up with my own consultant afterwards. But the surgery was cancelled due to complications in an earlier procedure. So I went home and waited to be rebooked.

I went in a third time. I actually had the surgery this time but only saw a young student and the anethesiologist. My consultant didn't even come to see me prior to the procedure. I was left on a wet bed for hours and told nothing could be done because no one knew where any dry bedding was. I was sent home in extreme pain, told nothing could be done about it. I was also told that I had to go back on the progesterone for endometrial hyperplasia -to see my GP about it - and that I would receive a follow up appt in the mail for my consultant.

Instead I received a discharge letter stating I was cured.

I also ended up with an extreme infection that spread from my genitals up my torso from being left on the wet bed.

I had hit the end of my tether at this point and just sunk into depression.

Eventually my GP said it was clear I couldn't tolerate the progesterone. She did try me on an alternative kind at a minimal dose but it didn't help.

Months later I received a letter for a telephone appt with my consultant. I was confused but had the appt. We discussed that she didn't understand why I was marked as discharged. We covered that my medication addressed the bleeding issues but it was the pain that was 💯 the main issue. We discussed a lap and she said if I could drop a little weight she would push it through. She would ask my GP to refer me to a nutritionist. Next thing I get a letter for an ablation procedure to address bleeding. I checked with my Dr and the letter they received didn't match anything the consultant and I had discussed or agreed in the telephone appt.

I cancelled the ablation and filed a complaint via PALS. This was now 2020 and Covid had hit and so it took longer than usual.

My complaint went to the head of the endo team at the hospital I should have went to originally. He listened, took notes, said my file had hardly anything on it including any plans and he would investigate and come back hopefully the next month to have an appointment regarding proper treatment. He said that is definitely sounds like I have endo and we need to make some plans going forward to help me both short and long term. This was Oct 2020. Covid hit hard and it was rife at their hospital. Everything was delayed. Meanwhile I received a letter from the NHS with a reply to my complaints letter and it did NOT match what I was told on the telephone call, which I had recorded.

I heard back for a proper appt this year (2021).

In the appt we discussed a hysterectomy as a long term solution for bleeding and I said I wanted to avoid if possible as my medication addressed any bleeding issues and I cant take HRT as I can't take estrogen (which was advised following blood work done prior to me starting the progesterone).

He discussed different types of progesterone and asked I try provera, orally, which I agreed to. I've been on it 2 months. It hasn't helped with pain. I'm weepy. I'm nauseous. My poor sleep patterns are worse. But I've persevered to try and give it a minimum of 3 months. He asked that I be referred to a pain clinic and have an up to date transvaginal ultrasound. I was already aware of how bad the ultrasound would be but I was determined to jump through the hoops.

In April 2021 my GP surgery received the letter from him. I've asked them four times to put the referral through. They only followed through a week prior to yesterday -Thursday, June 24th. I've been dealing with a GP other than my usual one as she has been impossible to get an appt with.

A week ago, Friday 25th June, I had my transvaginal ultrasound. It was horrible but the person that did it also carried out an external one too and told me I had a really large blood filled cyst on one ovary that looked endo related to her and abnormalities on the other side that also looked endo related to her and that was what she was putting in the report.

This week I went on my online file with my GP to see if they heard anything. The referral letter for the pain clinic was on there and said I have PCOS and a bit of period pain and am over weight. That I was wondering if they can suggest anything to help and that the consultants office didn't offer any clarification of what they hoped they could do.

I called the consultant's office and he is on holiday for several weeks. The secretary said the report from my scan shows a simple cyst with possibly some fluid and nothing serious apparent. WTF was what was going through my head. I burst out bawling at this point. She said that the endo nurse who works with my consultant is also on holiday but back soon and she would ask her to call me.

Every step of the way nothing is consistent. I'm told one thing and something else is done or noted. I have questioned myself. I have recorded conversations because I didn't trust myself anymore. I've involved my husband to check he was seeing and hearing things the same way - yes.

I don't know what to do anymore. I just don't. I spend at least 20 out of 28 days unable to do anything except try not to completely lose it with the amount of pain I'm in. I use maximum tramadol and mefenamic acid for pain, a four prong tens machine despite the damage it now does to my skin (bubbly rashes that are rough and bright red, painful and extremely itchy at once), and multiple heat bags at once to the point that I've burned myself with them just trying to get the deep seated pain to ease. Meditation, yoga, distraction techniques, chronic pain advice talks. Curled up in a ball, in a dark room, rocking and trying not to scream or cry (since it just makes me vomit) is a regular occurence. What started as extreme new back pain is now back, hips, and my upper legs that sometimes results in an inability to lift the leg on the same side that the cyst is supposedly on. I sleep on the couch mostly because the stairs are such a struggle. I have debilitating pain where period cramps traditionally are. We've been married just over 3 years and don't have intercourse because of the vaginal pain it causes and I usually start bleeding. The pain sometimes runs up my sides. I'm am usually either constipated or have diarhea. Bowel movements hurt 95% of the time. I've started struggling to not wee myself and it often hurts when I do urinate. I have no life. I just have pain and more symptoms and ...

And I don't know anymore. Because even when someone says they will help, in the end they never do.

So what is the point?

Just a side note, before anyone suggests it, I'm on benefits and can not afford going private.

Thank you if you've read this far. I feel like it is a giant hole with no way out.

[CryBaby91]

Hi Missy100, I'm so so sorry for everything you've been through. I honestly wish I could wave a magic Wand and get you a decent consultant! Right, can you check the BSGE register yourself and find proper endometriosis specialists near you? You don't have to let the GP pick one, you can decide which hospital you're referred to! It's NICE guidelines that if you want a second opinion (in England only) you can request a referral to any hospital within England of YOUR CHOICE. So get on that list and do some research into who are the best specialists nearest to you that have NHS lists. I'm I'm sorry you can't afford private, I couldn't for 10 years and I've just got financially stable enough to do so. I paid £170 for mine and I'm now on his NHS list, they have payment plans and stuff too so it could be worth enquiring, or maybe start saving up for just 1 appointment and really really research who you visit. Also make sure they have NHS lists and usually put patients on them. You can ring their secretary and ask, or just do a Google search of the consultant name with NHS at the end.

Pain wise, have you tried a heated pad? It's It's my life saver as I can set the temperature and when I feel myself getting burned I can turn it down. Which has saved my poor skin lots of pain! It's also got a timer so if you fall asleep you it turns off automatically. Might be a better solution than the microwave bags.

Have you tried any diet changes to help with pain and other symptoms? I know it sounds silly, but it can sometimes help take the edge off.

Sex wise I totally understand! I'm lucky not to bleed often, and if I pick the right time in my cycle sometimes we can be gentle. But foreplay could be a good option for you, things that are gentle and not full penetrative sex. Lots and lots of intimate cuddles, massage, kissing. There's so much more to sex than the full act! As long as you are both having love and intimacy then try not to worry, I bet your husband understands and wouldn't want to cause any pain. Just talk openly and see if you can find things that you both enjoy?

Please don't give up, you're not alone in this and this is absolutely not in your head. What the doctors are doing is WRONG and you have every right to proper treatment. Please don't stop pushing for help! Xxx

[Missy100 in reply to CryBaby91]

Hi CryBaby,

Thank you for your reply. I was referred to a BGSE center the end of 2017/beginning of 2018 and the consultant I am under is the head of the center I was originally referred to (but was originally bumped from when I needed to reschedule in 2018).

The Endo nurse called me back yesterday. I have long term anxiety that can cause panic attacks and cause me to shut down and be unable to communicate with people I don't know/don't feel comfortable with (particularly in person). This makes being without a support person (typically my husband) extremely difficult when in a scary/unfamiliar setting or when around a lot of people or when there is a lot of interaction that is necessary. Being in a busy, shared area is impossible for any length of time (such as a public ward room). I shut down completely (freeze) or go into an outright panic with all the bells and whistles. It is mortifying and I just wish the floor would swallow me up. She basically said they were unwilling to find a way to assist me if my mental health had to be considered as it was less important.

She tried to push a hysterectomy despite agreeing it will not solve any pain issues and in the next breath stressed how a lap was too dangerous. She said if I wanted to know why I was told one thing and something else was put on the report I would have to contact the ultrasound department and speak to the person who did my scan (which I did try to do, to be told the person that did my scan is now away on their holidays).

She was very much blatent in herpoor veiled disbelief that endo could possibly be my issue (but did say that she didn't believe that nothing was wrong) and in the end said she would have the consultant call me the next time she spoke to him but confirmed he is on holiday for several weeks so it won't be for a while.

It is the only BGSE center anywhere near to in my area, and anything further will basically be impossible to arrange transportation to. I've had to fight to get hospital transportation in the past as my husband doesn't drive and we had no one else to depend on (I am the sole driver in our family) when I've been put under sedation for day surgery. Also, commiting to driving further isn't something I feel secure doing as on a bad day I wouldn't be able to as I don't take strong pain medication when driving, for obvious reasons.

Saving for a private appointment is not possible. We already live hand to mouth. I wish I could work. I use to have a good professional career I can no longer do. I loved working. Pain and mental health have put an end to it and ruined any headway and progress I worked years to achieve before Covid even arrived.

I have had electric heat pads in the past but prefer the microwave bags, but thank you for the suggestion. I think it is just one of those things that ends up a personal preference.

I have tried cutting out dairy, meat and wheat at different times and although I find limiting wheat and dairy has helped my bowels in earlier days, eliminating has never helped any further. I've also tried things like seed cycling with no improvement to date

We've tried switching timing and position etc but just can't get past the issue with intercourse. My husband is very supportive and understanding and has never given me a hard time about this or pushed or pressured. He has a chronic pain condition from a train accident years ago in which his back was injured and I believe it helps him to understand in respect of how pain can take over everything.

I can't help feeling bad for him. I'm nothing like the person he met. I not even anything like the person he married as I continued to deteriorate in my health so dramatically even in the last three years.

At the moment I am just stuck waiting. Waiting to see if the pain clinic will help despite the pathetic letter the GP sent them. Waiting for people to come back from their holidays to see if maybe they will listen to me this time.

I imagine I sound like a real whinge bag and I dislike that this is where I'm at. Maybe one of these days someone will listen and actually follow through with what they say. I'm not holding a lot of hope these days, but the alternative is to give up completely.

Thank you for reading and offering support. It means more than I can say.

[happyseal]

Hello Missy100,I first want to tell you well done being so persistent looking for a good practitioner and enduring all these hardship for so long. You are very strong I have to say.

I feel for you and I want to send you a giant healing hug.

I have read your post.

I feel there is a lot, is it ok to pm you?

I'm happy to share some of my tips and whatnot. And I feel that having someone who you can chat will be good for you.

We are a here for you,

[Missy100 in reply to happyseal]

Yes, if you feel PMing is better for you, please feel welcome to do so 🙂

[JulesUK]

Your story makes me so mad that all this is still going on and I know you are not alone in being messed about like this. I had several issues at the beginning of my journey but it did not go on as long as yours. I think it was was last year that endo uk had a uk Petition for the government to take endo seriously. At your stage I would contact endo uk for advice and I would also contact my MP. Please don’t be forced into a hysterectomy if you do not want one especially as this does not stop endo. I’m so sorry you are going through this I know it’s so hard to fight the constant battle with the medical establishment when you are in so much pain. You’ve done a brilliant job of pushing for answers so far, keep strong. x

[Missy100 in reply to JulesUK]

Thank you for reading and extending your support. It really does help.

[RenRemSasse]

OMG I read it all. You have been so so brave and so much patience within you. I cannot imagine it. I have just been diagnosed for only a week and been to ED twice as the pain is sooooo much I cannot walk. It goes through my right leg too. For only a week I feel I’m going nuts, like they don’t believe how much pain you’re in. I would not want anyone to have this kind of pain. So I thought first it was spinal compression so had to push them for Spine MRI which actually took me a year to convince them to do it because since July 2020 I had back pains like no other, because I worried why I could not walk. So in the end they found an ovarian cyst on my right. So they referred me to gynaecologist. Gyne did pelvic ultrasound externally as I refused vaginal ultrasound. So they confirmed I have a cyst about 1inch a week ago. Gyne said I have two options. 1) Hormonal Treatment and 2) Pain management. Surgery for me was not an option. So I went for pain management which is dihydrocodeine for a week. I only take it when I am on severe pain. Severe pain for me is when I cannot get out of bed and cannot walk kind of pain. Apart from that I am in pain everyday which I try to bear because I do not like taking pain killers as it is not really treating the MAIN cause. Plus taking too much pain killers, I know will kill my kidneys in the long term and that will be another problem I am avoiding. Anyways I went to ED yesterday as I could not bear the pain, its like a dead pain, feels like you’re dying kind of pain, like its the end of it kind of pain. I don’t know if anyone would ever believe me but its that kind of pain that I wish no one would ever go through. So other doctor think its appendicitis then the gyne think its my ovarian cyst that is causing the pain. So again, she offered me the pills and pain management as it is the only course of treatment at the moment before we talk about surgery. Before Being in this Endometriosis support group I thought I would have sorted this out for a week or two but reading to many people experiencing Endometriosis, it took them years and years. I feel like I should not give up because people are experiencing far more worst than mine. To think I really thought my experience is worst. I don’t know how I can ever help anyone experiencing this. I am also thinking of taking Turmeric capsules. Turmeric is an anti-inflammatory remedy, like ibuprofen kind but not painful for the stomach.

[Missy100 in reply to RenRemSasse]

Thank you for taking the time to read and reply.

You are in an extreme amount of pain for a 1 inch cyst. Have they confirmed if there is something else that may be causing it to be so painful such as a particular position/location? If there isn't a contributing factor anything under 2 inches usually doesn't cause much issue pain wise (well, unless it bursts, but although it can be alarming, especially not knowing why, that is temporary - not a long term lasting pain). I've had a variety of cysts over the years both smaller and significantly larger.

If they are are saying that your pain is all tidied up into this supposed cyst you should push them for more info and clarificaion why they think it could be causing so much pain - as well as why they think it will only be temporary.

Some people have said tumeric has helped them with anti inflammatory properties but I don't get on well with it. I have a lot of llergies and intolerances that I need to consider day to day. I can usually tolerate a tiny amount in.something that constitutes as a main meal but not regularly day to day.

I truly hope you find a solution that works for you.

[Lesleyann421]

EndoThey said I had that too test the works it was my chrons disease that wA flaring and infecting ovaries had injections to put me in the change still got pain then I thought f.......it and started studying herbs found self heal prunella vulgaris in my front garden ironic isn't it 30 years of suffering and the cure waS a weed in my front garden grass. It flowers for 3 months of the year and you just steep hot water on it in a teacup and drink it I felt a difference within20 mins was amazing. All the best.

[Missy100 in reply to Lesleyann421]

Thank you for taking the time to reply and let me know what has helped you.

I'm not familiar but will take a look into it.

Please forgive my short reply. I'm low on energy but wanted to at least reply in some form so you know I appreciate you taking the time to try and help.

[Lesleyann421 in reply to Missy100]

How did you do with the prunella im.just looking through my old blogs im still well with the weed that is currently in flower and ready to gather so thought I would see how you are coping

[Missy100 in reply to Lesleyann421]

Hi,

I'm maybe 2 weeks out from stopping the most recent try with progesterone and feeling much better mentally. I did check in with my GP before doing this. She also prescribed me additional medication to assist with pain which has made a difference in my ability to cope day to day,. Especially as it has allowed me to finally get some sleep.

I've read information on prunella and funnily enough realised I know the plant, as it was frequently growing wild where I grew up. I just wasn't aware of the proper name or potential benefits. I'm hoping to discuss it in further depth with a practitioner familiar with using it. There is not a lot of control regarding quality of what you can buy here and I want to make sure I am approaching it in a way that is likely to lead to the best possible results.

Unfortunately, in the meantime, I've now had an unrelated health issue pop up and been placed on yet another medication to try and help bring it under control asap, but it comes with a high risk of delayed allergy reactions (which I'm extremely sensitive to - my husband always jokingly says it is easier to say what I am not allergic to or don't have adverse reactions to than what I do, when asked for my allergies). I've been advised to hold off trying anything new that might affect the medication or make it hard to determine what any side effects might be a result of as it will take time to regulate the dose I need, through daily monitoring, as it is life threatening.

I have not forgotten about prunella and do plan to revisit it, as everything I've read sounds promising from a beneficial pov.

Thank you so much for checking in. It means a lot to me.